A recent investigation by ProPublica.org shows not only that the medical community regularly abuses patient privacy, but that the responsible parties are seldom punished.

Since October 2009, more than 1,140 significant breaches of patient data have been reported by providers, organizations and their third-party associates. The information involved more than 41 million people, and pilfered in many ways, from stolen laptops, hacked servers and even paper records left unattended.

“Yet, over that time span,” ProPublica reported, “the Office of Civil Rights has fined health-care organizations just 22 times.”

Last year alone, the California Department of Public Health, which also levies fines against hospitals for compromising patient privacy, imposed 22 penalties; as of last month, it had imposed eight such penalties so far this year.

The Office of Civil Rights is authorized to audit health-care organizations to ensure they are protecting patient records, and to impose fines as high as $1.5 million per violation. Why is it so reluctant to protect people by exercising its authority?

The office, which has fewer than 200 employees and a budget of just $39 million, may use fine money for enforcement. Data security experts told ProPublica that the office lacks the resources to fulfill its oversight responsibilities, which each year also include reviewing more than 2,500 Medicare provider applications for civil rights compliance, more than 4,000 discrimination complaints and more than 15,000 claims of violations of the Health Insurance Portability and Accountability Act (HIPAA).

Anyone who has been in a doctor’s office or other medical setting since the late 1990s is familiar with the forms they’re given about their HIPAA rights. HIPAA mandates standards for the use and dissemination of health-care information, and directs how organizations must protect electronic medical records.

More than a decade after the passage of HIPAA, the Health Information Technology for Economic and Clinical Health Act (HITECH Act) required organizations to publicly report breaches involving at least 500 patients, and boosted the amount the feds could fine them for violating patient privacy and record security. It also directed the Health and Human Services Department (HHS) to conduct audits, and extended the rules to third parties affiliated with health-care organizations.

But in 2013, the inspector general faulted HHS for not performing audits mandated by the act after a pilot audit program in 2011 and 2012 showed that 102 of the 115 organizations reviewed had problems with security or weren’t following rules to safeguard patient privacy. Only now, according to ProPublica, are follow-up audits getting started.

The Office of Civil Rights reviews every data breach, no matter how large or small; years might pass before they’re resolved. Unnervingly, the number of large data breaches is growing, including the one recently discovered by health insurer Anthem that exposed the medical information of about 80 million people. Last year, according to ProPublica, 278 large breaches were reported; between 2010 and 2012, there were fewer than 200 per year.

At a privacy and security forum in December 2012, Leon Rodriguez, then-director of the U.S. Department of Health and Human Services’ Office of Civil Rights, said, “We’ve now moved into an area of more assertive enforcement.”

You shudder to think what would happen the office weren’t so assertive…

Protecting privacy isn’t just about securing data. Last month, one of the nurses who contracted ebola last year at the Dallas hospital that treated victims sued the facility’s parent company not only for treatment shortcomings, but, she claimed, because the hospital violated her federal privacy rights when it videotaped her without permission. After a dying patient was depicted on a TV show, legislation was proposed last month in New York to make it a felony to film people getting medical treatment without prior consent.

The feds declined to be interviewed by ProPublica, but in a statement repeated that it “aggressively” identifies and investigates “high-impact cases that send strong enforcement messages about important compliance issues.”

In May, it hammered New York-Presbyterian Hospital and Columbia University with fines of $4.8 million for failing to secure the electronic health records of 6,800 people. One doctor, for example, had tried to remove his personal computer server from a shared network, which sent very detailed patient records flying onto Web search engines. The data flood was discovered when somebody found a deceased partner’s personal health information online.

It took five year for the feds to impose an $800,000 fine against Parkview Health System after 71 cardboard boxes of medical records of as many as 8,000 patients were left unattended in the driveway of a physician’s home. Remarkably, the incident wasn’t reported by the facility as a large data breach, but by the physician.

Some organizations told ProPublica that they didn’t know the status of their cases. One was the state of Utah, which reported in 2012 that hackers had gotten data on Medicaid and children’s health insurance claims, and that the Social Security numbers of 280,000 people were captured.

In the meantime, to its credit, Utah’s Department of Technology Services has increased security and funding, now monitors its network 24 hours a day and conducts an outside security assessment every two years.

Industry experts contacted by ProPublica said that the Office of Civil Rights is trying to catch more flies with honey than poison them with vinegar. They said the feds are working with organizations to improve their security and punishing only the worst lapses. Providers often voluntarily agree to make necessary changes if they’re not fined, the feds said.

Some security experts told ProPublica that the government must flex its fining muscles to address the wave of patient data breaches. One such expert compared the situation to environmental pollution.

“If the cost of polluting is zero, companies will pollute,” he said. “How would a rational company not do that? If your CEO said we’re going to spend four times as much money not to pollute, he would be fired. What you need is to make security rational.”

We’ve said it before. We’ll say it again: Doctors provide better, safer care when they listen to — and hear — what their patients are saying.

Some doctors realize this, and one of them wrote about it last week in the New York Times. In an op-ed titled “Dr., Shut Up and Listen,” Dr. Nirmal Joshi said that “A doctor’s ability to explain, listen and empathize has a profound impact on a patient’s care,”

“Interpersonal and communication skills” were recognized as key physician competencies in 1999 by the American Board of Medical Specialties. Medical schools and residency programs then began to train and test students on these skills, but after they’re finished, they’re seldom evaluated further.

Joshi illustrated the problem with the story of one patient, “Betsy,” who saw a series of doctors about her rapid heartbeat and overwhelming stress. Doctor No. 6 finally asked about her use of over-the-counter medicines.

She was taking one to lose weight that contained ephedrine. That’s a decongestant and bronchodilator used to treat asthma and fever, but it’s also a stimulant. But before someone bothered to find out about Betsy’s use of it, she had been referred for psychological counseling to treat her anxiety disorder.

Which she didn’t have. As soon as she stopped taking ephedrine, her problems resolved.

“Asked why she hadn’t mentioned this information before,” Joshi wrote, “she said she’d ‘never been asked.’ Until then, her providers would sooner order tests than take the time to talk with her about the problem.”

Joshi deemed Betsy “fortunate,” because poor communication can have much worse, even dire, consequences than hers. He noted that a report by the Joint Commission, a nonprofit organization that reviews and accredits health-care organizations, found that communication failure, not a provider’s lack of skill, was responsible for more than 7 in 10 serious adverse health outcomes in hospitals.

Listening, empathizing and explaining are part and parcel of what a good doctor does. These skills have what Joshi called “a profound impact on a patient’s care.” But they’re woefully missing in the standard delivery of health care.

A survey Joshi read found that 2 in 3 patients discharged from the hospital don’t even know their diagnosis. Another study found that in more than 6 in 10 cases, patients misunderstood directions after they visited their doctor’s office. “And on average, physicians wait just 18 seconds before interrupting patients’ narratives of their symptoms.”

That’s not just bad manners, it’s bad medicine.

We believe strongly that patients are responsible for their health care, responsible for reading labels and directions, for asking questions about treatments and side effects, and what tests are supposed to measure, their risks and their benefits. But patients taking responsibility does not excuse doctors from helping them do so.

Joshi and his colleagues in Harrisburg, Pa., started a communication program in a large urban hospital challenged by a high poverty rate among its patients, a high rate of childhood obesity and a high rate of uninsured patients. They started by assessing how doctors communicated with their patients, and it wasn’t a happy result.

Physicians introduced themselves in only about 1 in 4 encounters. So of course the overwhelming majority of patients later were unable to identify their doctor. Physician encounters routinely were brief and rushed. Patients had limited opportunity to ask questions. And professional empathy was in short supply: One tearful patient related the recent death of a loved one, right after which the doctor said, “How is your abdominal pain?”

Joshi’s team established a physician training program involving actors as patients in a variety of situations. They had a “physician coach” sit in on real patient interviews to provide feedback.

And it worked. Patient satisfaction with doctors, as measured by a standard questionnaire, rose 40 percentile points on a national rating scale.

Happier patients are healthier patients, Joshi noted; one study published in The New England Journal of Medicine, he said, showed “that higher patient satisfaction was associated with improved outcomes for several diseases, including heart attacks, heart failure and pneumonia.”

Joshi acknowledged that a lot of his peers reject communication programs such as his because they’re too intrusive on their clinical practice, and/or too time-consuming. “But,” he wrote, “we need to move away from the perception that social skills and better communication are a kind of optional extra for doctors. A good bedside manner is simply good medicine.”

To read more about how to communicate with your doctor, read some of our blogs on the subject here,here, and here.

Treatment guidelines help doctors and other health-care providers understand and follow the best clinical practices, but as a recent commentary in the New York Times points out, they also can undermine the best care for some patients.

In “Don’t Homogenize Health Care,” Dr. Sandeep Jauhar denounced the lack of flexibility for practitioners to diagnose and treat individual patients. “In American medicine today,” he writes, “’variation’ has become a dirty word. Variation in the treatment of a medical condition is associated with wastefulness, lack of evidence and even capricious care. To minimize variation, insurers and medical specialty societies have banded together to produce a dizzying array of treatment guidelines for everything from asthma to diabetes, from urinary incontinence to gout.”

There are good reasons, he acknowledges, for consistency and the universal application of certain factors to certain situations, and that varying from them not only is unwarranted, but sometimes, he says, “deadly.”

He cites the example of a class of drugs called ACE inhibitors, which enlarge blood vessels and reduce blood pressure, making the heart’s job of pumping blood easier. These drugs are prescribed to heart-failure patients, but Jauhar says that only 2 in 3 U.S. physicians prescribe them to such patients. About 57,000 Americans die each year, he writes, because their doctors are varying from the best clinical practice.

But there’s also real danger in the unwillingness to vary from what’s been proved to be the best approach in most situations. “The effort to homogenize health care,” Jauhar writes, “presumes that we always know which treatments are best and should be applied uniformly. Unfortunately, this is not the case. The evidence for most treatments in medicine remains weak. In the absence of good evidence recommending one treatment over another, trying to stamp out variation in care is irrational.”

Jauhar is not new to ruffling feathers within his profession. As an intern he wrote a memoir and followed up with “Doctored: The Disillusionment of an American Physician,” about his residency at a prestigious New York City hospital where he described a crisis in American medicine.

As a cardiologist, he calls his field “a paragon of evidence-based medicine” in which “most treatment recommendations are based on expert opinions, not randomized controlled trials. Rarely is there one best option.”

Patient preferences, he suggests, also must be considered. “Medical decisions necessarily involve value judgments, and who better to make those decisions than the patient?” he asks. “If a fashion model doesn’t want curative surgery because it will scar her face, that may make sense in the context of her priorities. As a doctor, I may not agree with her, but I have to try to understand her reasoning and abide by her decision.”

As we regularly write, the practice of the best medicine is a collaborative effort between patient and doctor, and sometimes the collaborators hold different values, opinions and hopes for the future. Both must respect the perspective of the other in order to get the best outcome for the individual patient.

Jauhar believes that when a treatment recommendation comes from relatively weak science, the patient’s preferences should hold greater weight, “and the more variation you should expect to see. This is a basic conflict in modern medicine: treatment uniformity, which aims to optimize population health, versus treatment variation, which aims to respect individual choice.”

He accepts that it’s a conflict without an obvious solution, but that it’s likely to shape medical care in the near future.

This changing balance, of course, requires the provider to be frank with the patient about what he or she and the body of medical knowledge, actually know versus what we think it knows.

Most people aren’t science geeks; they need their doctors to be their honest partners. If they are, and if something goes wrong, it has been demonstrated that patients are much more likely to accept a poor outcome.

Unlike many arrogant, God-playing doctors, Jauhar is refreshingly frank about the medical profession’s shortcomings. “After spending nearly two decades in medicine,” he writes, “I am still amazed by how spare the evidence is on which we doctors base our medical decisions. Treatment guidelines, often accompanied by a de facto mandate, are frequently reversed.”

Yeah, they are. Jauhar offers the example of beta-blocker drugs. Only a few years ago they routinely were recommended for almost all patients undergoing noncardiac surgery. But new research has shown that the drugs might increase significantly the risk of stroke at the time of surgery.

“I remember colleagues questioning the beta-blocker recommendation for certain patients and being admonished for not being ‘evidence-based.’ I shudder to think,” he says, “how many patients were left disabled by strokes because of the blanket adoption of this standard.”

There’s no shortage of these “never mind” medical recommendations. Hormone replacement therapy for post-menopausal women once was prescribed widely, and now isn’t. Taking a daily aspirin for heart health is an ongoing debate. Science is a dynamic, evolving practice, and medical professionals have to accept that what’s right today might be proved wrong tomorrow.

Or at least wrong for some people in some situations.

Big brother plays a role here, Jauhar says. Many physicians chafe against being forced to apply guidelines and checklists or risk not being compensated by insurers and public underwriters. “Instead of being allowed to deliver ‘patient-centered’ care,” he says, “many physicians feel they are being co-opted by regulations. Some feel pressured to prescribe ‘mandated’ treatment, even to frail older adults who may not benefit. Guidelines are supposed to assist and advise. But all too often, recommended care in certain situations becomes mandated care in all situations.”

If you like a uniform liquid consistency, homogenization is always good for milk. It isn’t the same for people.

When a doctor sends a patient for an imaging test, it can take hours, days and sometimes weeks for the patient to hear the results from the doctor who ordered the test. That’s nerve-wracking. So why can’t patients get this information sooner, directly from the radiologist?

That’s what Dr. Jennifer Kemp, herself a radiologist, wanted to know when her husband had cancer and got scans every three months while they waited each time for the results.

“I couldn’t believe how anxiety-provoking it was to wait even an hour,” she told the New York Times. “Sometimes he would get a scan I didn’t feel comfortable interpreting and he had to spend 24 hours waiting — and I had connections. That was absolute torture.”

So she did something that should benefit all patients, not just those with medical profession connections. She’s heading a committee of the Radiological Society of North America whose mission is to make radiologists more accessible to patients. That means giving them test results immediately if they are requested. Kemp does it, and gives her patients and their doctors her direct telephone number.

Most of us have had X-rays, ultrasounds or MRIs, and lots of times, the only person you meet is the technician who puts you in the machine. The radiologist, the medical doctor who writes the formal interpretation of the study based on looking at all the images, usually sits in a dark room in the back, or even many miles away. The standard procedure, engraved in stone practically since Marie Curie discovered X-rays, is for the radiologist's report to go to the ordering doctor only, not to you the patient.

The Times reports that the American College of Radiology agrees with Kemp that patients now want to know how and why doctors make decisions about their care. The paper also says that an increasing number of medical facilities and doctors’ practices allow patients to access their medical records online, and such records often include imaging reports.

The move toward access is not about legally mandating radiologists to disclose information to patients, it’s about illuminating radiology practices that have done so successfully. It’s about practitioners informing their peers what patients want.

Still, as The Times points out, it doesn’t occur to a lot of people to ask to speak to a radiologist, and many referring doctors don’t seem to have a relationship with these specialists — they just give their patient a prescription for a scan and send them on their way. Some might recommend certain radiological facilities, but insurance coverage also figures into the choice of whom to use.

As always, some practitioners resist changing their ways. Some radiologists aren’t used to talking directly to patients, and can’t answer questions patients might logically ask after hearing the results of the scan. “A radiologist, despite an M.D. degree,” The Times explains, “cannot answer questions about drugs or surgery and without knowing the clinical history may not know if abnormalities are important. And would doctors even refer patients to a radiologist who blurts out a scan’s results?”

But many patients want to hear about their results, and with the exception of mammograms, how quickly that happens for an MRI, PET, CT or ultrasound, depends on the individuals — doctors and patients — involved.

Dr. Geraldine McGinty, chairwoman of the American College of Radiology’s commission on economics, told The Times that if a scan shows something really serious or unexpected, she tries to contact the referring doctor before telling the patient. “If this is not possible and the patient asks to speak directly with me, I’ll make the call to the other doctor as soon as possible, ideally before the patient leaves my office.”

Mammogram results usually are given to the patient right after the scan because the Mammography Quality Standards Act of 1992 requires women to get their results from the radiologist. The act says that if the scan suggests the patient needs a biopsy, the radiologist must discuss it face-to-face with her.

But many radiologists consider their jobs only to be working in dark isolation, reading scans and sending reports to referring doctors. Dr. Christopher Beaulieu, a radiologist at Stanford, told The Times that patients seldom ask to see their scans or talk to him or his colleagues. And if they do, “there is pushback” from radiologists and referring physicians.

Beaulieu says radiologists don’t have time to meet regularly with patients, and that they worry about having to deliver bad news. He also knows that some referring physicians, he said, “don’t want some radiologist telling them or their patients what is wrong or what to do.”

We understand that’s a difficult part of medicine, and that a radiologist isn’t qualified to address the typical “what’s next?” response a patient might have. But we believe that to demur from patient engagement is patronizing and dismissive, and communicating is part of the delivery of quality medical care.

As McGinty acknowledged, making radiologist-patient consultations routine requires a culture shift. That means radiologists and referring doctors need to establish their own relationships. It means radiology groups must perform some outreach, like posting videos depicting how radiologists should talk to doctors and patients.

If you are having an imaging test, and you want to discuss what the radiologist sees as soon as possible, tell your referring doctor that you want to know, and will ask the radiologist. Make your interests clear when you check in for the test. You also have the right to a copy of the scan, which often can be provided in an electronic format.

Usually, you won’t be able to see the radiologist in person, so ask to make a phone appointment. Otherwise, consider the approach of one source for The Times story. He has lung cancer and has had innumerable scans. At each imaging appointment, he asks for a copy of his scan.

Once, he wanted to discuss a scan report with the radiologist, but could never get the doctor to return his calls. “So I just went there,” he told The Times. “I found the guy’s office and walked in.”

“He seemed physically afraid of me,” he said, believing that the radiologist never saw patients, so, “his immediate reaction was to hit the panic button.”

What if your doctor's office changed the sign on the door, and nothing else about it, except the price of care suddenly doubled? You'd be in the strange new world of cancer treatment.

Insurance companies are reducing reimbursements to oncologists, and the drugs they use for treatment are increasingly expensive. The only way many of these doctors can continue to treat their cancer patients is to sell their practices to a hospital system. But that doesn’t mean cancer treatment is business as usual — it means the same treatment is more expensive.

A story last week in the New York Times told the stories of oncologists who said they were forced into selling their practices because they couldn’t maintain a viable business receiving lower fees while the drugs they buy and sell to patients cost more.

The paper cites figures provided by the Community Oncology Alliance Practices, an advocacy outfit. Since 2008, of the nation’s 1,447 independent oncology practices, 544 were purchased by or entered contractual relationships with hospitals, 313 closed and 395 reported being in financial distress.

When cancer patients move from private to hospital care, “Because of quirks in the payment system,” The Times said, “patients and their insurers pay hospitals and their doctors about twice what they pay independent oncologists for administering cancer treatments.”

Dr. Barry Brooks, one source for The Times story who practices privately in Dallas, explained what’s happening in oncology like this: “Say there was a Costco that had very good things at reasonable prices. Then a Neiman Marcus comes in and changes the sign on the door and starts billing twice as much for the same things.”

The Times said cancer treatment is different from that of other diseases because of unique systems of reimbursement that include what drugs patients may get, and where they’re treated. As we wrote in our, “Calling Out the Corruption in Medical Care,” such systems invite conflicts of interest and put doctors in the position of making treatment decisions based not on what’s best for an individual patient, but on whether and how much he or she will be reimbursed.

Some observers say the Affordable Care Act (ACA) has accelerated private practice sales to hospitals because many people bought relatively spare Obamacare insurance plans that don’t cover the expensive cancer care they need. So doctors, who buy cancer drugs in advance, face budget problems when their patients can’t pay, and the overhead is crushing.

Doctors in private practice often send uninsured and Medicare patients to hospitals for their chemotherapy, and keep them as patients for office visits. As one such practitioner said to The Times, “The disgrace is that we have to treat people differently depending on how much money they’ve got. That we do diminishes me.”

Unlike other doctors, oncologists maintain a wide stock of drugs in their offices, and if the patient requiring one dies or can’t pay, the doctor takes the loss. “That used to be acceptable because insurers paid doctors at least twice the wholesale price of drugs,” The Times explained. “Now doctors are reimbursed for the average cost of the drug plus 4.3%, there are more and more drugs to stock, and drugs cost more.”

For private practitioners, the sale of chemotherapy drugs no longer generates impressive income, but it does for hospitals. They get higher reimbursement for administering drugs, deeper discounts for buying large quantities and many take advantage of the federal program that compensates research hospitals and hospitals serving poor people.

The ACA also requires documentation of efficiencies in medical care that some private practice doctors find onerous and time consuming. If they consolidate with a hospital, the drug purchases and paperwork are someone else’s problem.

Medical centers, of course, tout the advantages of this changing business model. An executive with the American Hospital Association told The Times that patients get tests such as CT scans and MRIs, lab work and pharmacy services all in one place. The convenience, and the facilities’ 24-hour care for everybody, including uninsured and underinsured people, justify the higher fees, he said.

Hospitals really want cancer patients, of course, because they use lots of hospital services. They generate a lot of revenue. But as these patients move from private suite to large medical center, the treatment is less personal and often less efficient. As The Times stated bleakly, “The private practice oncologist is becoming a vanishing breed, driven away by the changing economics of cancer medicine.”

When physicians air their grievances on the New York Times op-ed page about how health care in the U.S. is undermined by dark forces, even skeptics should pay attention.

In a commentary last week called “How Medical Care Is Being Corrupted,” Drs. Pamela Hartzband and Jerome Groopman declared that “financial forces largely hidden from the public are beginning to corrupt care and undermine the bond of trust between doctors and patients. Insurers, hospital networks and regulatory groups have put in place both rewards and punishments that can powerfully influence your doctor’s decisions.”

A doctor’s treatment decisions, of course, should be based on what’s best for the patient, not what’s best for the infrastructure that’s supposed to enable the best care, not thwart it.

Hartzband and Groopman, who teach at Harvard Medical School, explain that cold numbers are poor drivers of quality care. What’s commonly called “metrics,” or numerical standards doctors are supposed to meet under contracts for medical care that reward “pay for performance,” are derived from whole population studies. That is, they’re generic standards for large groups of people, not measures to be applied to individual patients. People are different, and although metrics are useful in research and in shaping policy, they’re woefully inadequate in the assessment and support of a single human being.

Metrics, the writers say, do not account for patient preference, differing opinions or optimal practice for a given doctor-patient circumstance. Yet metrics are what the industry demands from providers if they expect financial support.

“[D]octors are rewarded for keeping their patients’ cholesterol and blood pressure below certain target levels,” Hartzband and Groopman cite as an example. “For some patients, this is good medicine, but for others the benefits may not outweigh the risks. Treatment with drugs such as statins can cause significant side effects, including muscle pain and increased risk of diabetes. Blood-pressure therapy to meet an imposed target may lead to increased falls and fractures in older patients.”

But physicians who meet designated targets for such values might receive not only a bonus from an insurer, but high ratings on the company’s website. Patients and potential patients generally would assume the high rating denotes high quality. The doctors who don’t meet the values are penalized financially through lower payments and “shamed” by lesser status on the website when, in fact, they might well be the superior practitioner, from the patient’s perspective.

It’s a great business growth model, and a lousy model for understanding human variables.

Doctors are only human; they’re not immune from the pressure to comply with the metrics. They might feel, say the writers, “pressured to withhold treatment that they feel is required or feel forced to recommend treatment whose risks may outweigh benefits.”

When you have a choice of drugs to treat a certain problem, there’s as much art as science in figuring out which is best for the patient. Genetics, living circumstances, age, gender, mobility … lots of things figure into the decision of who should get what drug.

Insurance companies don’t care. The writers decry how often larger co-payments are imposed on certain drugs as a way to dissuade doctors and patients from choosing higher-cost medications that, in the artful judgment of the people who know best, are the best match.

The writers offer WellPoint as an example. It’s one of the largest private underwriters of health care. It recently “outlined designated treatment pathways for cancer and announced that it would pay physicians an incentive of $350 per month per patient treated on the designated pathway.”

Bad call. As Hartzband and Groopman note, oncologists (cancer doctors) are hardly unified about what is optimal in cancer care. They regularly treat patients who deviate from treatment guidelines, and embracing that deviation is what drives one of the most significant recent advancements in cancer treatment — the concept of customized care, of targeted therapy.

It used to be that everybody with a certain kind of cancer, for example, got the same kind of chemotherapy drug in the same dose. Some did fine, some didn’t. But now cancer patients might get one of several kinds of chemotherapy drugs, they might be switched around or they might get a combination, depending on their genetic profile, the severity of side effects and other factors.

So, should oncologists make chemotherapy (or any drug) decisions based on these factors or based on adverse effects on payment? “Further,” the writers note, “some health care networks limit the ability of a patient to get a second opinion by going outside the network. The patient is financially penalized with large co-payments or no coverage at all. Additionally, the physician who refers the patient out of network risks censure from the network administration.”

How dare actuarial interests put doctors in a moral dilemma when a patient asks, as he or she should, “Is this treatment right for me?” What if the insurer covers the cost of one drug, but the doctor doesn’t believe it’s the “right” treatment?

Is health policy always and only about what’s best for a whole population? Can policy never bend to the individual good?

“We fear this approach can dangerously lead to ‘moral licensing,’” write Hartzband and Groopman — “the physician is able to rationalize forcing or withholding treatment, regardless of clinical judgment or patient preference, as acceptable for the good of the population.”

As medicine moves away from the old paternalism when patients never questioned, much less participated, in their care, it’s moving toward a new paternalism imposed by the insurers and regulators that control payment.

The writers propose that these powerful outside interests be subject to the same kind of transparency that the Physician Payments Sunshine Act established to expose (with mixed results) potential conflicts of interest by physicians with financial ties to pharmaceutical and device companies. “We propose a similar public website to reveal the hidden coercive forces that may specify treatments and limit choices through pressures on the doctor.

“Medical care is not just another marketplace commodity,” they conclude. “Physicians should never have an incentive to override the best interests of their patients.”

When it comes to medical malpractice, doctors are concerned about something the rest of us haven’t thought much about —the use of electronic medical records.

Writing on Medscape.com, Neil Chesanow, senior editor of the site geared toward health care practitioners, explains how a doctor can be sued if his or her medical records compromise patient safety or confidentiality.

As we’ve written, although mistakes happen and some need to be corrected through legal means, the single best way a doctor can avoid being sued is to make the doctor-patient relationship a priority of care.

That means communicating often, and with respect. Studies have shown that health-care providers who admit their mistakes, and apologize, are less likely to be sued. This seems especially so in terms of record-keeping.

Being compensated for having been medically harmed isn’t about vengeance, it’s about rightful redress of grievances. And people who have strong relationships are much less likely to be aggrieved about mistakes of minimal consequence.

A lot of Medscape’s professional readers say that electronic health records (EHRs) are time-consuming and make patient visits longer. Many try to streamline their use, and in the process leave themselves vulnerable to malpractice lawsuits.

“Even if your EHR has a bug or design flaw,” Chesanow writes, “it's up to you to contact the vendor to get it fixed. Otherwise, if a patient is harmed as a result of the glitch, you may bear the blame in court. That's what the vendor contract you signed essentially says: The buck stops with you.”

Here are some ways physicians might try to make EHRs more efficient but that could put you at risk:

copying and pasting large pieces of text from one record to another

sharing a single password with several staffers in the practice

ignoring pop-up support prompts

Asking your doctor about these habits can be difficult; it can make him or her defensive. Practitioners are frustrated by the demands of insurance paperwork and medical facility administration; many feel like they’re forced to use a certain system, then held liable when it doesn’t work. Like everybody else, they get irritated by the idiotic demands by faceless corporations and technology that doesn’t work as it’s supposed to.

Here’s how one doctors expressed his frustration. "The software engineers employed by my office's EHR vendor are arrogant, unresponsive to my requests, and write a simple sentence so poorly that their emails are unintelligible. I am dismissed as a nuisance by the vendor because I don't have any financial authority over the EHR. From a malpractice standpoint, I feel my only options are to quit or keep a record of my complaints and how they have been ignored by the vendor."

So when you ask about how your records are kept, be sympathetic to their plight — a doctor who sees you as a partner instead of a difficult busybody is more likely to tell you what you need to know, and to protect your interests.

"The best doctors were the country doctors," one provider told Medscape. "Doctor to patient — not doctor to computer gizmos, and somewhere in this hole of technology is the patient. Could you throw me a rope, please?"

After three-hour neck surgery, Peter Drier had anticipated bills from the hospital, his surgeon and the anesthesiologist. He knew his insurance would cover most of those costs. What he hadn’t anticipated was the bill for $117,000 from an “assistant surgeon” he didn’t even know.

Welcome to the world of “drive-by doctoring,” explained by the New York Times in a long, cautionary tale about how physicians and other medical providers help each other in caring for patients. The Times says it’s increasingly common that the helpers — medical experts, assistants, consultants and other hospital employees — charge patients or their insurers hefty fees, and might be summoned even when the need for them is questionable.

Patients usually don’t realize the helpers been involved until their bill arrives. And if the assistant/consultant isn’t part of the patient’s insurance network, it can be a whopper.

The practice is called “balance billing”: hospitals, clinics, labs and other medical facilities bill patients for the balance between what they want to charge and what the insurance company reimburses … or doesn’t.

Balance billing is illegal for Medicare patients, and in most states when privately insured patients stay in network for their care.

The Times story shows not only how huge these charges can be, but also how patients and/or their insurance companies can respond, and that hospital bills, notoriously long and detailed, often contain errors you should dispute. Often patients can achieve financial recourse after the fact, but sometimes not.

People with physical or mental disabilities have disadvantages the rest of us can only imagine, and when it comes to the delivery of health care, the insult is compounded. Disabled patients have a harder time than other people in finding a doctor, and when they do, they receive inferior health care, less information about prevention and fewer screening tests.

According to a recent post on the NPR health blog, about 1 in 5 Americans has a physical or mental disability, and not even 1 in 5 U.S. medical schools teaches students how to talk with a disabled patient about his or her needs. In May, we blogged about a single-state study showing that disabled patients receive inferior care in many ways.

More than half of medical school deans say that their students aren't competent to treat people with disabilities, and about the same percentage of graduates agree. Agencies that accredit and license practitioners have no requirements for clinicians to demonstrate competence treating patients with disabilities.

Dr. Leana Wen, who wrote the NPR blog, is an attending physician and director of patient-centered care research in the Department of Emergency Medicine at George Washington University. One day in the ER, eight patients had presented within minutes of each other. The junior resident, two interns and a medical student signed up for all of them … except the guy in his 20s complaining of back pain.

The middle-aged man with chest pain, the old woman with a broken wrist, the teenager with a sore throat all were seen. Len saw one medical student read the chart for the man with back pain, and replace it in the rack. Nurses avoided his room.

After 30 minutes, Wen assigned a team to care for him. The chosen nurse said, “"We drew the short straw here.” The resident said, "I already ordered labs and an X-ray. It's going to take too long to examine him, so let's just get this started."

The man wasn’t being difficult, he didn’t smell bad, he wasn’t drunk or contagious. He was in a wheelchair.

The reason for his disability was paralysis from the waist down, which had been his plight since a car accident five years earlier. He told Wen that he was used to waiting, to being the patient patient, because caregivers always avoided him.

As it turned out, his back pain was the result of a kidney infection, and his treatment amounted to being given an antibiotic.

Medical offices often have people who can interpret for patients who don’t speak English. Medical schools teach students about diseases so rare most will never see a case if they practice for 40 years. “Yet,” writes Wen, “there's been only halting progress in the care of tens of millions of Americans with disabilities.”

Per the Americans with Disabilities Act, it’s against the law to discriminate on the basis of disability; the act guarantees equal opportunities for individuals with disabilities in employment, transportation, public accommodations, state and local government services and telecommunications. But it doesn’t spell out that equal treatment in a medical setting is a disabled person’s civil right.

Medical professionals often deliver substandard care to the disabled because of mistaken assumptions; they’re often surprised, for example, to learn that they are obliged to discuss risks and benefits with patients who are cognitively impaired. Some are surprised to learn that they should ask a patient with a physical disability about sexual activity, just like they would anyone else.

In a study last year published in the Annals of Internal Medicine, researchers telephoned doctors' offices in four U.S. cities to make an appointment for a fake patient who was obese and used a wheelchair.

But more than 1 in 5 offices refused to see the patient for reasons including a lack of trained staff, a lack of equipment and/or personnel to help patients onto an examining table and lack of access to the building. The highest rate of refusal was among gynecology practices, at 44 in 100.

Some medical schools have pilot programs to teach students about patients with disabilities. Some schools encourage students to rotate through rehabilitation centers, and incorporate interdisciplinary learning with occupational and physical therapists.

That’s nice, but it’s a paltry effort to address a significant patient demographic. We agree with Wen: “Disabilities education needs to be a central part of medical training in the same way that learning to care for people from different cultural backgrounds is now.”

It’s too bad that Dr. Charolotte Yeh, an emergency physician, had to get hit by a car before experiencing emergency medicine from the other side of the bed. But she learned an important lesson we hope will be shared widely among her peers.

Following are excerpts from “’Nothing Is Broken’: For an Injured Doctor, Quality-Focused Care Misses the Mark,” a story in the journal Health Affairs that you’ll find disturbing, enlightening and maybe even familiar.

As a medical professional who became an accident victim and then a trauma patient, I was a participant-observer in emergency care, with a big-picture window into how well our health-care system does or doesn’t work. There’s just something about being boarded on a gurney in a hospital hallway for 15 hours that gets one thinking about paradigm shifts.

... I was struck by the uneven nature of my care, marked by an overreliance on testing and a narrow focus on limited quality metrics such as pain management or catheter care processes. Looking back, I believe that this approach fostered an inattention to my overall well-being. Instead of feeling like a connected patient at the center of care, I felt processed and disengaged. This is disconcerting, especially at a time when patient-centered care — that is, care delivered with me, not to me or for me — is becoming the new normal.

... Through my experience as a patient, I observed a bias in what the metrics track: toward the clinical and away from the personal. To help restore this balance and reassert the “art” of care, I see three areas that the medical community should address.

Beware the Culture of Testing

“When a test, such as a CT scan or a blood exam, is the centerpiece of care strategies, patient care can be compromised. As medicine and technology evolve, we may have become victims of our own success. We have become test-happy and technology-powered. These tools may provide us with good data on the patient, but this doesn’t mean we’re serving the good of the patient.”

Personalizing Care

“After I’d spent four days in the hospital, it dawned on me that not once had anybody come by to ask how I was doing, what I needed, what I wanted, or whether I had any concerns. I then understood something that my own patients had been telling me all the time: They don’t feel engaged in their own care. There is nothing personal about it.”

Patient-Reported Outcomes

“Patient-reported outcomes are a vital piece of the puzzle and are often overlooked, because of institutional inertia or culture. In my case over those first four days, the management of my reported pain was perfect, a 10 out of 10 — but it was the exception. Despite my requests for information and attention, it took a piecemeal evaluation over four days to sort out and diagnose the full damage to my body. My reports about my own condition did not seem to matter to anyone else.

“... (“what do you want,” “what are your fears,” “what matters to you”)…”

The report covered only one state, but its conclusion is disturbing: People with disabilities “fare worse” than other people in terms of physical and mental health and in their access to high-quality medical care from providers who are sensitive to their needs.

As reported by WBUR.org, Boston’s NPR news station, researchers from the University of Massachusetts Medical School’s Disability, Health and Employment Unit and the state’s Department of Public Health concluded that disabled patients often can’t get specialty medical care, and many can’t even find a doctor willing to treat even common medical conditions.

The report includes data from existing health surveys, an online survey and interviews with members of the disability community. The key findings:

About 25 in 100 people with disabilities is a smoker (about 16 in 100 adults without disabilities smoke).

Disabled people were more likely to report lifetime sexual violence compared with people without disabilities. The ratios were: disabled men, 7 in 100 vs. able men 4 in 100; disabled women, 1 in 4 vs. able women, nearly 1 in 5.

Adults with disabilities were nearly twice as likely to report being overweight as those without disabilities — 64 in 100 vs. 34 in 100.

But that’s only part of the raw health deal the disabled get. Nearly 3 in 4 disabled people who responded to report’s the survey were also troubled by the lack of affordable housing; nearly 2 in 3 had trouble finding adequate dental care, and about the same number had trouble finding adequate mental-health services. More than half found it difficult to find a doctor who understood disability issues, and the same number had difficulty getting transportation to a doctor’s appointment.

Communication was a problem: More than half of the respondents had trouble with support such as large-print materials, Braille and Computer Assisted Realtime Translation (CART) readers. Half had trouble managing chronic conditions, such as diabetes, paying for prescription medicine and finding a doctor who accepts public health insurance. Nearly half couldn’t find an accessible gym.

According to one survey respondent, “... people with disabilities are all too often still stigmatized and that stigma leads to being seen as a less important part of the landscape and so we become an afterthought.”

That people are made to feel this is unacceptable anywhere, and especially in America.

A man with back pain was advised to have a spinal fusion by a well-regarded surgeon to whom he had been referred by another doctor. The procedure, which fuses individual vertebrae together in the hope of alleviating pain, is serious, as all surgery is. The patient wanted to make sure this surgeon was a good choice, so he researched the doctor online.

The reports were good, and he had the surgery.

And now he regrets it.

We’ve written about spinal fusion as an often ill-advised procedure, or at least one about which professionals aren’t in agreement, but that wasn’t the problem here. As it turned out, despite the patient’s due diligence, he had been unable to learn that the surgeon had numerous malpractice lawsuits pending against him.

His story was told in the Washington Post, which made clear that finding out useful, relevant information about a doctor is a challenge, but also something anyone considering a significant procedure or establishing a patient-provider relationship should do.

The Post story interviewed Dr. Michael Carome, director of the Health Research Group at Public Citizen, a consumer advocacy organization. Unfortunately, he said, there’s no foolproof way to vet your doctor, but there are ways to learn objective data about a physician that’s far more helpful than Yelp or a provider’s website.

State medical boards are a good place to begin. Most have web sites where you can search for individual physician licenses, but the range of information beyond that depends on the individual state board. Some offer information about disciplinary actions taken against a physician and payments made for medical malpractice lawsuits; some don’t. If your state’s info menu seems a bit sparse, you might be able to learn more by contacting the medical board directly, and requesting it.

For a list of state medical boards and contact information, link here.

Board records disclose only settlements that have been made; they don’t disclose pending lawsuits or investigations that are underway. And, as we’ve noted before, states vary in how aggressive they are in going after problem doctors.

As Carome told The Post, “Too often, medical boards give problem physicians a slap on the wrist — like a letter of reprimand, probation or a suspended license that is then immediately reinstated — so that they can continue practicing.”

So if you see something on a doctor’s record that seems minor, it might indicate a larger problem, and Carome advises asking questions.

Although you can get basic information free on medical board sites, you might also want to invest in a more thorough report via Docinfo. A feature of the Federation of State Medical Boards (FSMB), it offers information such as where a physician attended medical school, year of graduation, licensure history, board specialties, location, alternate names and disciplinary actions taken against him or her. Each report costs $9.95.

Federal law requires that suspended licenses must be reported to the National Practitioner Data Bank (NPDB), and although those records aren’t publicly available, hospitals and state medical boards can access them. Sometimes you might see some of that information, often not. But if you learn that your doctor has moved his or her practice from one state to another with an odd frequency, ask why; sometimes, the doctor is trying to stay ahead of the disciplinary curve.

Some independent websites also offer valuable information about individual physicians. Healthgrades.com is free for patients, and is subsidized by advertising from drug makers, medical device manufacturers and hospitals and doctors who pay extra to highlight their products and services.

Its doctor reviews are collected from patients as well as from information from the Centers for Medicare and Medicaid Services (CMS) and state medical boards, according to one of its executives. But like medical boards, Healthgrades’ information about lawsuits concerns only those that have settled, so a doctor with pending lawsuits can still seem “clean.”

And there’s always Dollars for Docs and Prescriber Checkup, both sponsored by the investigative news site ProPublica, which we’ve covered before. The first tracks money doctors receive from drug companies, and the second compares their prescribing habits of particularly dangerous medicine with those of their peers. (It also looks at how they prescribe brand versus generic drugs, so you can see how much their prescribing habits cost you.)

The point, of course, is to tease out any conflicts of interest, or situations that invite them. A doctor whose primary interest isn’t your good health is not a doctor you want to see.

If you do find information on the Internet that concerns complaints or lawsuits yet to be resolved, be skeptical. Dr. Daniel Spogen, board member of the American Academy of Family Physicians, told The Post that sometimes a doctor does everything right but the outcome is disappointing, and someone files a lawsuit. But unless you know the facts, you don’t know the whole story.

Of course, a long record of multiple lawsuits is never a good sign. And that’s the red flag the patient with the back problem couldn’t see before going under the knife. Anyone can make a mistake, but the people who make a lot of them shouldn’t be able to hide.

Empowered patients know how important it is to obtain and read your own test results, which, disturbingly often, ordering doctors forget to pass on. But try to get them directly from the lab itself and you often would run into a roadblock; "No, your right to obtain your own records applies only to your own doctor, not to a lab like ours."

A new federal regulation published this week finally gives patients the legal muscle to insist on a copy of their own test results from the lab itself. The new reg abolishes a long-standing laboratory exception to the HIPAA statute's right for all patients to obtain their own medical records (and importantly, to shield their privacy).

If you haven't taken the plunge and read your own test results, now is a good time to try it. You'll find that abnormal values are clearly highlighted (so they stand out to busy doctors perusing hundreds of test results a day).

The next question, of course is, "What does an abnormal result mean?" (Often nothing, especially when the result is just a nudge outside the normal range. But still, you want to know.)

Readers of this blog and savvy health-care consumers are familiar with the risks of overtreatment—how overtesting and overdiagnosis can, instead of promoting and preserving good health, undermine it.

Too much medical care is not only expensive, it can lead to tests rendering a false positive, leading to more tests and the possibility of complications such as infection. It can lead to results not generally considered “normal,” but that might be for you—something can be technically abnormal but if it had never been discovered, would never have done harm. Overtesting of the prostate is a prime example.

So, asks Dr. Leana Wen, who practices emergency medicine and wrote “When Doctors Don’t Listen: How to Prevent Misdiagnosis and Unnecessary Tests,” how do you ensure you’re getting the right amount of care? How do you know when you should consult a medical professional when you should follow his or her advice, and that it’s good advice in the first place?

Writing on KevinMd.com, she offers five ways to ensure your Goldilocks ration of health care so that it’s juuust right.

1. Work in partnership with your doctor.

The key to getting good medical care is a trusting relationship between you and your doctor. That doesn’t mean that you never question your doctor—in fact, good practitioners appreciate a robust curiosity and interest in your physical reality. It means developing a relationship of mutual respect that makes you the expert when it comes to your body, and the doctor the expert when it comes to medicine.

2. Make sure your doctor listens.

Wen says studies confirm that a patient’s history will point the way toward a diagnosis 8 out of 10 times, without the need for tests or further interventions. If your doctor orders tests instead of listening to your story, that leads to unnecessary testing—and potential misdiagnoses. Prevent this by telling a good story—that is, presenting a concise picture of your medical history, your family influences and your current complaint—and making sure it’s heard.

If your doctor isn’t interested in your story, or only mildly so, it’s time for a new doctor.

3. Ask about your diagnosis.

Become a student of your condition. Understanding what you have is key to figuring out what should do to feel better. Before you get any tests done, ask your doctor what he or she thinks you might have. That will give you some idea of what tests may be necessary, and also focuses your doctor to remember the important tests and have a justification for tests ordered.

Ask if there are options to tests or interventions he or she recommends, and what are the risks and benefits of each.

4. Ask about every test that’s performed.

Every test has a risk, whether it’s a blood draw or a lung screening. So make sure you understand why each is necessary. Ask about the risks. Ask about how it would determine your condition’s management—what happens if it’s negative? What happens if it’s positive? And—this is important—what happens if nothing is done at all? The answers will help you gauge how important is it that the test be done now.

This applies whether you are visiting your doctor’s office, or are in the hospital.

When you need a prescription drug, often your doctor has a choice. What’s best for one patient with your condition might not be best for you—choosing the best drug is a matter of problem-solving, of matching a person’s variables—age, gender, allergies, other health issues, etc.—with the drug most likely to provide benefit with minimal risk of side effects.

But as investigative health journalists Tracy Weber and Charles Ornstein point out in a Los Angeles Times commentary, “For most of us, evaluating a doctor's prescribing habits is just about impossible. Even doctors themselves have little way of knowing whether their drug choices fall in line with those of their peers.”

How can you know, for example, if a doctor generally prefers expensive brand-name drugs when generics might be an equally suitable choice? How do you know if a doctor remains current with clinical trials and the latest drug information?

Doctors are seldom monitored, the writers note, to see whether they are prescribing appropriately. Not that it’s easy—there’s no consensus of what good prescribing is.

There’s a lot of bad, that’s for sure. Antipsychotics, for example, treat severe psychiatric conditions such as schizophrenia. But many doctors prescribe them as a sedative for older patients with dementia, even though they come with a "black box" warning of increased risk of death for these patients. Such alerts are prominent on drug packaging in order to communicate danger.

Lots of drugs are dangerous for elderly patients because they increase the risk of dizziness, fainting and falling, among other things, and usually there are alternatives. But that doesn’t stop some doctors for prescribing them inappropriately.

Weber and Ornstein, who, as reporters for the public interest organization ProPublica, were instrumental in Dollars for Docs, that site’s tool for tracking how much pharmaceutical companies pay health-care providers to tout their wares, are eager to remove the shroud of secrecy around the prescribing habits of doctors.

They needed to quantify the problem, so they turned to the companies that purchase prescription records from pharmacies and sell them back to drug companies that use them for marketing and sales purposes. The data miners declined to sell—at any price—to the reporters. So they turned to Medicare and its 32 million seniors and disabled people who account for 1 in 4 prescriptions written every year.

After filing a Freedom of Information Act for the prescribing data and months of negotiation with officials, they got a list of the drugs prescribed by every health professional to enrollees in Medicare's prescription drug program, Part D.

“What we found was disturbing,” they report. “Although we didn't have access to patient names or medical records, it was clear that hundreds of physicians across the country were prescribing large numbers of dangerous, inappropriate or unnecessary drugs. And Medicare had done little, if anything, about it.”

One Miami psychiatrist wrote 8,900 prescriptions in 2010 for powerful antipsychotics for patients older than 65, including many with dementia. An Oklahoma doctor routinely prescribed an Alzheimer's drug for younger patients who didn’t have the disease but whom, he believed, were helped by the drug to calm the symptoms of autism and other developmental disabilities, never mind that there’s no science to support this idea.

Weber and Ornstein found many doctors who had been charged with crimes, convicted and disciplined by state medical boards or terminated from state Medicaid programs for the poor. Still, nearly all of them remained eligible to prescribe for Medicare patients.
“If you or a loved one were a patient of one of these doctors,” they ask, “wouldn't you want to know this?”

They’ve compiled the data into an online database called Prescriber Checkup so you can look up a doctor's prescribing patterns and compare it with those of other doctors.

The project is in its infancy, so it doesn’t say if your doctor is doing something wrong, but it enables you to formulate important questions: Why does your doctor choose a drug few other seldom do? Does your doctor favor expensive brand-name drugs when less expensive generics are available? Has your doctor been paid to give promotional talks for drug makers?

The writers hope the new tool will be as useful to doctors as patients. They hope practitioners will compare themselves to their peers and to those they admire. They hope clinics will see how their staffs stack up. They hope researchers will track patterns and learn something helpful about why doctors prescribe the way they do.

“In the meantime,” they conclude, ”arming yourself with prescribing information allows you to be more active in your health care, or that of an aging or disabled loved one.”

Medical record transparency is vital for patients who perceive themselves as partners in, not just recipients of, medical care. You have the right to review your medical file, and to have copies of it. Increasingly, practitioners understand that an informed patient is a better patient, and that care decisions should be mutual.

Patrick Malone's book, “The Life You Save: Nine Steps to Finding the Best Care—and Avoiding the Worst,” advises patients always to read their own medical records to improve their understanding of the doctor's advice, to spot errors or omissions and to maintain participation in their health care. OpenNotes is at the forefront of the patient participation movement. This initiative invites patients to review the notes clinicians make during patient visits.

A recent post on KevinMD.com illustrates how OpenNotes works on a large scale. The writer is Jon Darer, chief innovation officer of Geisinger Health System, a large health services organization that serves more than 2.6 million people in Pennsylvania. Darer says that more than 500 of Geisinger’s doctors have begun sharing their office visit notes with patients under the OpenNotes concept.

All Geisinger primary care doctors and general pediatricians, as well as some specialists in pediatrics, dermatology, endocrinology, pulmonology, nephrology, rheumatology, cardiology, cardiothoracic surgery, vascular surgery, neurosurgery and obstetrics/gynecology are participating in OpenNotes.

Unlike some practices, where patient requests to see information from their files often are treated as a bothersome request, Geisinger patients are encouraged to examine information. After their doctor visits, they receive an email inviting them to read their doctors’ notes via a secure online patient portal.

As Geisinger sees it, such access enhances adherence—the ability and willingness of patients to follow practitioner instructions and medication regimens—and reduces the chances for misunderstandings and errors. That saves everyone time, money and distress.

This enlightened approach was borne of research: Geisinger was one of three study sites that participated in a trial of OpenNotes, Darer says. The study was subsidized by the Robert Wood Johnson Foundation. Over 12 months, 24 primary care physicians from Geisinger, and 81 doctors from Beth Israel Deaconess Medical Center in Boston and Harborview Medical Center in Seattle shared their notes with patients.

Among Geisinger patients, more than 8 in 10 patients viewed their notes online. Darer writes that they reported feeling more in control of their care and more likely to take their medications as prescribed when doctors shared their notes.

As always, one study does not—should not—change the world. But this one was so compelling about the value of giving patients direct access to their notes that most providers and departments at Geisinger agreed to adopt OpenNotes as the new standard of care. “Some departments,” Darer makes clear, “are still tentative, willing to test this new openness with patients with just a few physicians. We’re not expanding OpenNotes into psychiatry or pain medicine. And while pediatricians are participating, at this time we have excluded adolescents and young adults between ages 12-17 in order to safeguard their privacy.”

Still, about 2 in 3 eligible providers expressed willingness to share their notes. Darer anticipates even greater participation in the next year. In addition, Geisinger intends to train medical students in the art of this patient participation; it hopes to make notes written by residents and fellows available to patients later this year. The organization’s goal is to have 8 in 10 of its eligible doctors participating in OpenNotes by mid-2014.

“As we move ahead, we hope others will join us in adopting OpenNotes,” Darer concludes. “It appears to be a safe yet effective way of engaging patients in their care. We believe that OpenNotes represents an important milestone in achieving transparency with our patients and, if we believe what our patients say, OpenNotes will become standard practice in health care across the country.”

If you don’t have a copy of your medical record, request one from your doctor. Read it thoroughly, and ask for updates every time you seek care. If you don’t understand something, ask for an explanation. If you see an error about your medical history, test results, diagnosis, medication or anything else, discuss it with your doctor and, if necessary, send a written clarification. As medical records become increasingly digitized and shared with a multitude of providers, facilities, insurers and billing agents, errors can be compounded and present significant risk. Remember: You’re in control of your information.

Ever been in a conversation when you feel like the only Earthling among Venutians? Maybe it’s a group of geeks discussing batch files and bit busters, or pilots yakking about ETEs and FARs. Jargon is useful for specialist communication, and it’s also a way of excluding outsiders.

When it comes to understanding your health condition, the last thing you want to feel like is an outsider. But a new study published in JAMA Internal Medicine concluded that, good intentions aside, the language used in some patient/consumer medical information is beyond the scope of their comprehension.

As noted in the JAMA study, 59 in 100 Americans use the Internet to learn about health and health care. While often useful, the Internet can contribute to the “say what?” problem. One of the study’s authors, Dr. Charles Prestigiacomo, described the situation to Reuters. "Patients will often come to the office, and one of the first things they say to you, especially about technical information, they'll say that they've been on the Internet, and they'll quote one or two key phrases back to you," he told the news organization. "Unfortunately, the little soundbites, while accurate, may not be complete."

Prestigiacomo and his researchers from the University of Medicine and Dentistry of New Jersey (UMDNJ) applied several measures to the notion of readability scales (including one charmingly known as "simple measure of gobbledygook (SMOG) grading"). They looked at materials developed by 16 different medical specialty societies.

The average reading level of the online materials ranged from ninth grade to college sophomore. As the JAMA study noted, the average American adult reads at a seventh to eighth grade level. The American Medical Association, the National Institutes of Health and the U.S. Department of Health and Human Services, according to the study, say that patient education materials should be written at a fourth to sixth grade reading level.

As Reuters notes, the new study's findings mirror those of previous research by the same scientists analyzing patient education materials in individual specialties.

"Organizations often end up using jargon," Lisa Gualtieri, who studies health communication at Tufts University, told Reuters. They use "the language they're accustomed to as opposed to [the language] the people they're trying to reach are accustomed to using."

Prestigiacomo, a neurological surgeon, tries to reach his patients with the use of analogies. "There are only so many ways you can describe an aneurysm," he told Reuters. He tells patients these ballooning blood vessels are "like a blister on a tire."

Acknowledging that that image isn’t “perfectly accurate,” he said, “… sometimes we have to realize that simplifying it to an analogy may be the best way for patients to understand it."

Of the medical specialties the study examined, obstetrics/gynecology was particularly notable for its failure to communicate. Researchers showed that its patient materials averaged nearly six clichés for every 50 pages, among other language mistakes that undermined rather than illuminated the point being made. The problem with clichés, one of the study authors told Reuters, is that “You go from region to region in the U.S., people aren't familiar with what each cliche refers to."

Sometimes, the ability to communicate isn’t just translating more advanced material for a lay readership, it’s a matter of basic writing skills. Using an active instead of passive voice is more immediate, and generally communicates better.

Here’s the difference:

The ultrasound was ordered by the doctor—passive voice.

The doctor ordered an ultrasound—active voice.

The range of passive versus active voice use among the specialties studied was 4% for family medicine versus 27% for neurological surgery.

"Concise and to the point is the way to go for this sort of stuff," one study author told Reuters. The authors also suggested that websites use photos and videos as well as text.

One good outcome of the study, according to Prestigiacomo, is that one medical specialty group has committed to rewriting its patient materials after seeing the results of the research.

If you are researching health or medical information, and you don’t understand the material, use the search function of your browser to define unfamiliar or confusing terms. Some excellent sites for medical information include:

We’ve written about the wide range of state authority and competence in regulating medical practice, (for example, here and here.) Mostly, compromised patient safety occurs because of official acts of omission; rarely does a state appear to commit to compromising patient safety.

But as reported by the Milwaukee Journal Sentinel and analyzed by Pop Tort, the civil justice blog from the Center for Justice & Democracy, lobbyists are pushing legislation in Wisconsin to enable doctors to tell patients less than they’re obliged to communicate now.

Specifically, they want to rewrite the standard of “what a reasonable patient would want to know” to “what a reasonable physician would tell a patient.”

Such a regulatory change in informed consent—the idea that patients must be given the facts in order to make intelligent decisions about their medical treatment—pretty much renders the concept meaningless.

“The last thing you want to do is roll back the way we get information and how much information we get,” Martha “Meg” Gaines told The Journal Sentinel. She’s director of the Center for Patient Partnerships and an associate dean at the University of Wisconsin Law School.

Informed consent, as Pop Tort makes clear, should be what patients want to know, not what their doctors think they should be told. That’s the old, paternalistic model of patient relations that enlightened people reject.

The Journal-Sentinel recalled the story of how such a regressive idea gained legislative traction.

In 2003, Thomas Jandre, a heavy equipment operator, suddenly felt dizzy and weak. He was drooling and slurring his words. Co-workers took him to the hospital, where an emergency physician ordered a CT scan, and eventually diagnosed Bell's palsy, a viral nerve inflammation that causes facial paralysis.

She did not order an ultrasound of the carotid artery, which could have revealed that a blockage had cut off blood to Jandre's brain, and that he was having a mini-stroke.

Jandre had a massive stroke 11 days later that left him partially paralyzed and without use of his left hand.

An ultrasound subsequently showed that his carotid artery was 95% blocked. Had it been detected earlier, according to the lawsuit, surgery might have prevented the stroke.

A jury decided that the doctor was not negligent in her diagnosis, but was negligent in failing to tell Jandre that an ultrasound would determine whether he was having a mini-stroke. The jury awarded him $2 million in damages.

After appeal, the Wisconsin Supreme Court upheld the decisions of lower courts, an opinion, the Journal-Sentinel reports, that sharply divided the court and motivated medical professionals to propose the bill now before the Legislature to change the law on what doctors must tell their patients.

“Should patients be told about tests and procedures for medical conditions they might have, even if doctors don't believe they have them?” the newspaper asks. “Should a doctor explain why other diagnoses were ruled out? If not, can patients still make informed decisions about their care?”

Doctors and hospitals worry that the court decision is so broad that the list of options that must be disclosed to patients could be endless. The court’s lead opinion disagrees: What a patient must be told is not limitless, but is ruled by what a reasonable patient would want to know.

If you were in Jandre's shoes, wouldn’t you want to know if an inexpensive, noninvasive test could help determine if you were at risk of a major stroke, and if so, be given options about what to do?

The proposed law not only changes the standard to give physicians the keys to “reasonableness,” it requires them to tell patients only about alternative treatments for a diagnosis and their risks and benefits.

The court said the patient's condition—not the physician's diagnosis—should determine what the patient is told. And the current standard still offers physicians protection from the outlandish—they do not have to disclose information on highly unlikely possibilities.

Of course, “highly unlikely possibilities” is a definition open to individual interpretation, but given Jandre’s symptoms, no reasonable practitioner would have considered the possibility of a stroke “highly unlikely.”

It’s the rare person who never loses his or her temper, never has a meltdown. Doctors are no different, except that their bad behavior can cause harm to someone who expects them to do the opposite. When that happens, especially in a hospital, as a recent story by Kaiser Health News/Washington Post said, “… doctors' bad behavior is not merely unpleasant; it also has a corrosive effect on morale and poses a significant threat to patient safety.”

In a 2011 research paper called “Disruptive Physician Behavior,” 842 hospital administrators were surveyed by the American College of Physician Executives. More than 7 in 10 said disruptive behavior occurs at least monthly at their hospital; more than 1 in 10 said it was a daily occurrence. Nearly all—99 in 100—said they believed such conduct negatively affected patient care, and 1 in 5 associated it with patient harm.

Sometimes it’s a matter of poisoning the work environment. During a complex abdominal operation in 2011, a surgeon was handed a device that had been improperly prepared by a surgical technician. The doctor slammed it down in anger, accidentally breaking the technician's finger. The surgeon was suspended for two weeks and told to attend an anger management course for doctors.

Many hospitals, the story relates, have been slow to address the problem of disruptive, angry doctors, most of whom are surgeons or other specialists. One study in the Journal of Medical Regulation estimated that 3 to 5 in 100 physicians exhibit unacceptable behavior such as berating nurses who call them in the middle of the night about a patient, throwing scalpels at trainees they perceive as slow, demeaning co-workers they consider incompetent or cutting off patients who ask a lot of questions.

For a long time such behavior was tolerated, excused, even, because the practice of medicine is so stressful and because hospital administrators were reluctant to confront people who might be generating a lot of revenue for their facility.

Although boorishness is increasingly being recognized, sometimes it still wins—at a hospital in Virginia recently, an operating-room nurse with 30 years' experience quit after a surgeon screamed at her—again--when she told him that an instrument was missing. According to KHN/Washington Post, hospital administrators said only, "Well, that's the way he is."

In 2009, the Joint Commission, the independent, nonprofit organization that accredits hospitals, imposed regulations requiring hospitals to institute procedures for dealing with disruptive behavior. It recommended a "zero tolerance" approach for health professionals who act out. That includes nurses, but researchers say that they mostly do so toward other nurses, and that their behavior is less likely to affect patients.

Hospitals and state medical boards are starting to refer these brutes to one of the anger management counseling programs designed specifically for a physician clientele. Sometimes the program is called “executive coaching,” but that’s just a euphemism for “get your act together, you jerk.” Most of the docs enrolled are middle-aged men who have been ordered to attend.

"Many hospitals and health-care systems are beginning to address it just to keep their accreditation," Peter Angood, formerly chief patient safety officer at the Joint Commission, told KHN/Washington Post. He compares the problem to road rage, and says it, too, can have deadly consequences.

Laura Sweet, deputy chief of enforcement for the Medical Board of California, told KHN/Washington Post that the licensing body has investigated several maternal or fetal deaths that occurred because nurses failed to contact doctors about a worrisome reading on a fetal monitor "for fear of being chastised or ridiculed."

The story recalls one nurse who called a physician at home because a patient in the intensive care unit had developed aspiration pneumonia. That occurs when food or vomit is inhaled into the lungs, and it can be lethal. The doctor criticized the nurse’s training and did nothing. The patient died.

Then there was the surgeon who kicked an anesthesiologist out of the operating room after the two had argued. That left the patient unmonitored during surgery, a serious breach of safety.

Alan Rosenstein, a researcher/physician, found that bad behavior by doctors drives nurses out of the profession, and contributes to the nursing shortage. Rosenstein, former West Coast medical director of the VHA hospital network, told KHN/Washington Post that poor conduct also can lead to lawsuits by employees alleging the existence of a hostile workplace, and that hospitals just can’t afford to ignore the problem.

Changes in how health care is delivered, the demand that doctors see more patients, reduced nursing staffs, the way doctors are trained in medical school and the professional uncertainty that comes with hospitals buying up medical practices can cultivate bad behavior, some experts suggest.

But that doesn’t excuse unacceptable behavior—medicine is inherently stressful and learning to handle it is part of the job. The KHN/Washington Post story noted that most doctors who participate in anger management programs have long histories of conflict with colleagues and administrators. In other words, they don’t act out in one extreme case, they have a pattern of rude, inappropriate conduct.

To her credit, the surgeon who broke her colleague’s finger in an OR hissy fit was distraught by her behavior. She attended the anger management program at her own expense. Now in her mid-40s, she told KHN/Washington Post that she had behaved as she had been taught by the men in charge of her residency and fellowship training. One of her mentors once threw an instrument at her in the OR.

Many people in these programs are superior technicians and are beloved by patients, even if their colleagues can't stand them. One professor of psychiatry told KHN/Washington Post that often they’re narcissistic, compulsive perfectionists who defend their behavior by saying they acted in the best interests of their patients.

But even they need to be smacked upside the head. William Swiggart, the director of Vanderbilt’s Program for Distressed Physicians, tells participants in the course (cost: $4,500), "This is a course based on how you're perceived. I'm happy to assume your heart's good. But your behavior sucks."

If you're a patient facing serious heart surgery -- a transplant or a valve replacement, say, anything that requires surgeons to stop the heart from beating while they repair it -- you want the most skilled, experienced hands working inside your chest. All other things being equal, nobody wants a part-time doctor working on them.

But what if you could have "America's Doctor," Mehmet Oz, operate on you?

The reporter posed a hard question to Eric Rose, the surgeon who trained Oz:

I asked if he would place his confidence in a heart surgeon, no matter how gifted, who operated just once a week, as Oz does. “Well,” he replied, “in general you want a surgeon who lives and breathes his job, somebody who is above all devoted to that.” Again he mentioned Oz’s experience, but when I asked if he would send a patient to Oz for an operation, he looked uncomfortable. “No,” he said. “I wouldn’t. In many respects, Mehmet is now an entertainer. And he’s great at it. People learn a lot, and it can be meaningful in their lives. But that is a different job...."

Celebrity has a magnetic attraction. We all want to be around people who are famous and who dazzle us with their intelligence and personality. But does celebrity mix with surgery, where the surgeon's skills stay up-to-date only with constant practice?

We’re fond of the old saying, “There’s no such thing as a stupid question.” It’s not always true, but we still like it. Especially when it pertains to a medical appointment.

Writing on KevinMD.com, Dr. Naoto Ueno, an oncologist and cancer survivor, suggests questions you should ask your doctor during an appointment. As Ueno says, you’re entitled to ask any health-care provider anything that relates to your care, but he’s got a few lines of inquiry that will get the most from a limited amount of time.

First: Respect the fact that doctors don’t have unlimited time. Other patients are waiting for their attention, and the medical industrial complex does not compensate them to play 20 questions. If your situation is critical, you will get more time. If you don’t, it’s time to find another doctor.

It’s OK to be angry—about your bad luck, the long wait for an appointment, the mix-up with a prescription … whatever. But it’s not OK to express anger without also offering constructive criticism of how to improve the situation.

That said, Ueno counsels you to:

Prepare questions in advance of your appointment.

Before launching into them, ask if this is the best time to ask questions, and if not, when would be a better time.

If you don’t understand something, say so. Don’t nod your head if you don’t understand, or the doctor will assume that you do, and will keep talking. Doctors have a tendency to use professional jargon—if you’re not getting it, say so. Some patients are well-informed medical consumers, so if it seems like the doctor is dumbing things down, ask for a more detailed explanation.

Restate something to ensure you comprehended it; say: “My understanding is X; do I understand this correctly?” “Did we agree to X, then Y, then Z?”

Here are some questions, Ueno says, that aren’t helpful:

“Am I going to die?” Nobody knows. With some illnesses, it might be hard not to ask, but try another approach to learning what you can: “How long do you think my symptoms/illness might last?” “When do you think the tumor might shrink?” “When can I return home or to work?” Doctors generally can’t predict overall outcomes, but they’re pretty good at estimating some concrete aspects.

“What would you do if this were your loved one?” Although this question can be productive in some situations, beware unless you’re very familiar with the personal values of your doctor; you might be misled into a decision that might not satisfy you later.

“I hate clinical trials/chemotherapy/some other treatment.” A doctor might not mention a possible treatment in the future, even if you have changed your mind. If you do have a change of mind about any aspect of your care, make sure your doctor knows.

“I hate so-and-so.” Most doctors are put in a tough position when patients criticize their fellow professionals. They might fear that you will criticize them to someone else. If you have a problem with another health-care provider’s care, be specific about the problem, not the person. The exception, of course, is if someone committed malpractice, failed to acknowledge a mistake or refused to communicate. Those people are unprofessional and do not deserve to be protected.

As people become more aware of the waste associated with overdiagnosis and overtreatment and as the government strives to make the delivery of high quality health care more efficient and responsive, measures to connect patient satisfaction with provider payment are becoming popular. (See our blog about doctor rating services.)

But one practitioner, writing on KevinMd.Com, has written a thoughtful essay inviting people to reconsider the equation of Satisfaction=Higher pay. Such a model, he suggests, actually might punish the best health-care providers and work against better patient outcomes.

“I hope my patients are satisfied,” Dr. John Mandrola, a cardiologist, writes. “Improving the lives of people is why doctors do what they do. How much we help our patients is the metric. It’s the peg we hang our self-esteem on.”

“So yes, of course, patient satisfaction is really important.”

But, he says, “on a list of well-meaning but really dumb reform ideas, linking compensation of hospitals (or doctors) to patient satisfaction scores ranks near the top. Let me tell you why I think this way. It involves an important baddie—overtreatment.”

“Medical care,” Mandrola writes, “is not the same as customer service. For instance, I believe strongly in the importance of explaining and then implementing TLC—therapeutic lifestyle changes. … Asking or expecting patients to take care of themselves risks converting them quickly to the ranks of dissatisfied. A much easier road for the doctor is to avoid the elephant in the room—and simply write the prescription, order the MRI or refer the patient on to another specialist. This behavior will only worsen if we dis-incentivize doctors to speak the truth. We already have too much care.”

The problem becomes acute when there are two treatment approaches—one involving a well-reimbursed procedure and the other involving a discussion between doctor and patient about lifestyle changes (or other conservative measures) that, if the patient commits to them, might avoid ever needing the more invasive procedure. As Mandrola says, the problem with the conservative approach is the risk of a poor satisfaction score by the patient. “Not doing in our system is far harder than doing,” he says.

“Bigger care, more care, riskier care–these are the reasons why I oppose using satisfaction scores to pay hospitals and doctors.”

One of his patients went to the ER. The problem, Mandrola recounts, was the patient’s inability to follow his earlier advice, as a first-line defense against his heart issues, not to use caffeine and nicotine. Mandrola had also discussed with the patient the importance of adhering to a medically sound regimen of an inexpensive generic medicine. At the ER, Mandrola reminded the patient that “his health depended on him—not me.”

Mandrola’s ER visit confirmed that his patient’s experience was common: The ER was overflowing with patients who had strayed, in Mandrola’s words, “far from ‘the program.’” But the ER staff still had to address their problems as emergencies, possibly serious ones. As one ER doc told Mandrola, “ …[N]ow, with patient satisfaction scores, we have to be extremely careful not to make patients mad.”

Readers of this blog know that while we never defend practitioners who are lazy, uncommunicative or negligent, we also make clear that patients have a huge responsibility in securing their own best care. Being satisfied with your health care is partly up to you.

The use of opioid drugs is another area ripe for a misguided application of Satisfaction=MoreBucks. Sometimes patients aren’t happy with the amount or type of pain medicines they’re prescribed. Sometimes that’s the doctor’s oversight or error, and some patients are deprived of pain meds they need. But sometimes, it’s the patient making an unreasonable demand, one that has contributed to the overuse and abuse of opioids in this country. (See our blog, “FDA to hold hearings on misuse of powerful pain pills.”)

If you don’t give patients the medicine they want, they might not be satisfied with your care, even when it’s appropriate. Satisfying them can be dangerous.

Mandrola ends his essay “with this warning—from the real world of health care–to policy makers:

Gerontology is the study of health issues that go with old age and aging. It’s a medical specialty because, like the very young, older people have different biological, psychological and sociological needs. Medicare, the health insurance program that covers people in the U.S. starting at age 65, addresses many of the financial concerns of this population, but what about the hands-on care?

In a blog posted on KevinMd.com, Dr. Steven Reznick, an internal medicine physician, writes about his elderly parents residing in an assisted living facility. They are cognitively impaired, so he’s in contact with their personal physician, and lives nearby. They are lucky.

What if the circumstances were different? “What,” he asked, “would I look for in a physician for my elderly parents if they did not live close by?” Here’s his advice to older patients and their loved ones for choosing the right doctor.

Find someone with experience in geriatric medicine. Such practitioners have training and certification from the American Geriatrics Society. A board-certified internist or family practitioner with experience in caring for the elderly also might be fine. Either specialist should be available by phone for questions and to see patients on the same day that they develop a problem requiring a doctor’s attention.

The doctor should have hospital privileges at a local facility where patients might be taken by ambulance in an emergency. You want someone who can follow the patient into an acute care hospital if necessary. He or she also should have a professional relationship with a rehabilitation or skilled nursing facility so that patients can be treated in a rehab facility as they recover from an acute hospital stay.

The doctor should be a compassionate individual; a great listener and energetic advocate for his or her patients. It’s all too common for elderly patients to be marginalized, to languish waiting for evaluation in the emergency department or when trying to make an appointment for a test or specialty visit. While a strong family member or other patient advocate (see our blog about patient advocates) can assume this responsibility, some older people lack such support, and the doctor is their last hope.

Most of Reznick’s advice pertains pretty much to anyone seeking quality care from a doctor. Who doesn’t want someone compassionate, who doesn’t want someone available? But older people are among the weakest members of society, and often reluctant (or unable) to stand up for themselves. Qualities that are merely preferable for everyone might be critical for them.

Inquire at the local hospital medical staff office—those folks know who practices what and who’s accepting new Medicare patients.

Ask people you know whose values are similar to yours.

Inquire at local and county medical societies.

Beware of Internet sites such as Yelp and other crowd-sourced referrals—everyone’s experience is different, and if a stranger is making the referral, how do you know your tastes and values are similar?

Interview prospective doctors; if they decline because they’re too busy, they’re not good candidates.

Information is a powerful ally in making decisions about your health care, whether you’re pondering the wisdom of taking a daily aspirin or whether or not to have chemotherapy after a cancer diagnosis. Readers of this blog are aware of our interest in full, forthright communication with caregivers—it’s the currency of patient care.

A study from 2012 shows why advocating for patients and medical professionals to communicate well remains a priority.

Published in Health Affairs, a journal that focuses on the intersection of health policy, research and practice, the study acknowledges that some physicians are not always open or honest with patients.

Not, mind you, that sometimes they misunderstand, or just aren’t very good at the talking part of patient care, but that they knowingly mislead or lie to their patients.

Especially when it comes to disclosing errors or malpractice events in care.

As the study notes, the Charter on Medical Professionalism is a global professional guideline supported by the organization that accredits U.S. medical education. It requires openness and honesty in physicians' communications with patients, but data collected from 1,891 practicing U.S. physicians called into question whether those standards are universally embraced.

“The vast majority of physicians completely agreed that physicians should fully inform patients about the risks and benefits of interventions and should never disclose confidential information to unauthorized persons,” the authors reported. But:

approximately 1 in 3 physicians did not completely agree with disclosing serious medical errors to patients;

nearly 1 in 5 physicians did not completely agree that physicians should never tell a patient something untrue;

nearly 2 in 5 physicians did not completely agree that they should disclose their financial relationships with drug and device companies to patients;

1 in 10 physicians said they had told patients something untrue in the previous year.

“Our findings raise concerns that some patients might not receive complete and accurate information from their physicians,” the researchers concluded, “and doubts about whether patient-centered care is broadly possible without more widespread physician endorsement of the core communication principles of openness and honesty with patients.”

Chemotherapy, a frontline treatment for many forms of cancer, uses chemical agents to stop fast-growing cells from multiplying. That includes cancer cells, but also other fast-growing cells, which is why it has so many side effects. The chemicals do not discriminate between what’s cancer and what isn’t. Although chemotherapy sometimes can halt the progress of cancer, sometimes it can only slow it.

Sometimes cancer patients don’t understand the difference. Sometimes it’s because they don’t want to—they are in denial—and sometimes it’s because their doctors don’t communicate well. In the case of a terminal disease, this is very difficult conversational terrain, but it’s part of the job of a caregiver.

A recent story by Jane Brody in the New York Times put a fine point on this unpleasant situation.

She told the story of a woman dying of cancer whose oncologist considered delivering chemotherapy directly to her brain despite its significant risks and the fact that he knew it couldn’t help her. His explanation of what purpose a futile therapy would serve was, according to Brody, “I don’t want Judy to think I’m abandoning her.”

The instinct is compassionate, but it doesn’t, ultimately, help the patient. As Meier said, a better approach is to “restore the patient to the center of the enterprise.” Not only is it the right thing to do to help patients and their loved ones plan and prepare for the likely outcome of their illness, but it helps to stem the tide of overtreating and overspending on health care.

Dr. Marty Makary, author of “Unaccountable: What Hospitals Won’t Tell You and How Transparency Can Revolutionize Health Care,” pointed out that doctors also might be encouraged to prescribe chemotherapy because they get a commission.

A study recently published in the New England Journal of Medicine showed that many patients with incurable cancer don’t understand that chemotherapy does not cure the disease, that it’s only a palliative treatment; that is, one that relieves a problem, but doesn’t solve it.

They were asked how well their doctors communicated with them. The chances of misunderstanding were twice as high among patients who rated their communication with their physician less favorably than it was among those who rated it favorably. The researchers concluded that “Many patients receiving chemotherapy for incurable cancers may not understand that chemotherapy is unlikely to be curative, which could compromise their ability to make informed treatment decisions that are consonant with their preferences. Physicians may be able to improve patients’ understanding, but this may come at the cost of patients’ satisfaction with them.”

As Brody explained in The Times, doctors who care for people with an incurable or terminal illness often suffer as well. If your job is to heal, or at least make someone feel better, and you can’t, it’s only natural for anyone with a shred of humanity to feel like a failure, to feel frustrated and helpless. And sometimes, to grasp at straws; to mislead patients.

Some doctors might respond by visiting their patients less often, they might not return phone calls. It might not be intentional, but the patients, understandably, feel rejected in their greatest time of need. Brody says that “can exacerbate illness and pain and even hasten death.”

Ultimately, the oncologist who wanted to give his terminal patient a course of chemo to her brain realized that what she needed most at the end of her life was not more chemo, as Brody wrote, “but for him to sit down with her, to promise to do his best to keep her comfortable and to be there for the rest of her days.”

Today, I offer some very personal musings about how we treat disabled people in our laws.

One recurring theme in this patient safety blog is to promote self-determination for patients as the best guide through a tortuous, mistake-prone medical care system. If you learn enough about your own condition, that will help you get the best possible care. So I should be all in favor of the "right to die" ballot measure that Massachusetts voters will decide next Tuesday, right? Wrong.

The trouble with "right to die" laws, or "assisted suicide," is that it's too easy to morph from a sick or disabled person's "right" to die to the "duty" to die.

To be sure, there are noble intentions behind the “assisted death” proposals, but I can’t help wondering why we’re in such a hurry to ensure the right to die before we’ve done all we can to ensure that those of us with severe, untreatable, life-threatening conditions are given the same open-hearted welcome, the same open-minded respect and the same open-ended opportunities due everyone else.

By coincidence, today is the 23rd birthday of my autistic, mute son Brendan. Is his a life worth living? The sparkle in his eyes says:

"Most definitely, yes."

We already have the "right to die" everywhere. In no state is it illegal to take your own life. The new laws for "assisted suicide" are ostensibly about enlisting a doctor's help when the disabled person cannot complete the suicide without help. But there's a very slippery slope here. The real point is about society's attitude toward those with disabilities, who may appear, from the outside, to have lives not worth living.

The advocacy group, Not Dead Yet, has a lot to say about this. A couple of quotes from its web site:

In a society that prizes physical ability and stigmatizes impairments, it’s no surprise that previously able-bodied people may tend to equate disability with loss of dignity. This reflects the prevalent but insulting societal judgment that people who deal with incontinence and other losses in bodily function are lacking dignity. People with disabilities are concerned that these psycho-social disability-related factors have become widely accepted as sufficient justification for assisted suicide.

And another:

In judging that an assisted suicide request is rational, essentially, doctors are concluding that a person’s physical disabilities and dependence on others for everyday needs are sufficient grounds to treat them completely differently than they would treat a physically able-bodied suicidal person. There’s an established body of research demonstrating that physicians underrate the quality of life of people with disabilities compared with our own assessments.

And a final one:

Disability is at the heart of the assisted suicide debate. Some people fear disability as a fate worse than death. Proponents of legalized assisted suicide are willing to treat lives ended through assisted suicide coercion and abuse as “acceptable losses” when balanced against their unwillingness to accept disability or responsibility for their own suicide.

When you’re in the grip of a medical concern, whether it’s chronic or sudden, it can be difficult to remember how to be the best consumer of medical care. But that’s not only financially smart, it helps you get the best care.

Writing on KevinMD.com, Alex Lickerman, who practices internal medicine, understands that although common, paternalism has never been the best practice in medicine. Here are five questions he says any patient should ask when his or her doctor suggests a treatment for anything from a cough to breast cancer. The point is not only to get concrete information, but to encourage the doctor to see you as a full participant in the management of your care.

1. What’s the likelihood it will help me?

For many treatments, this answer is known, but that doesn’t mean your doctor will know it. Not every question has been studied, but if it has, the doctor should know. Ask specifically where his or her answer comes from. If it’s from a study, ask if you are similar to the study’s subjects in terms of age, gender, ethnicity, degree of disease, etc. If they were different from you, ask how confident the doctor is generalizing the results of the study to you.

2. If it does help, how much will it help?

Some treatments can make you better but that’s not necessarily a compelling reason to have them. What if the improvement is small, temporary or doesn’t restore you to full or acceptable function? What if the side effects are intolerable?

3. What is the likelihood it will harm me?

“No intervention—absolutely none—is without risk,” Lickerman writes. But some are small, such as a blood draw, and others aren’t, such as open-heart surgery. Knowing the range of risks is essential to enable you to weigh the value of the benefits from the answers to No. 1 and No. 2.

4. If it harms me, how much will it harm me? And how bad can it be?

If there’s a 1 percent chance the intervention will harm you, but that harm is death, as opposed to paralysis or post-operative pain, wouldn’t you want to know?

5. What’s likely to happen if I don’t do it?

Never forget that doctors are trained to solve a problem, and solve it with all the tools at their disposal. Most don’t ask themselves, “Must I do anything at all?” But some problems resolve on their own. The good doctors know which ones don’t, or at least the likelihood of that happening. And if they’ve taken a thorough medical history, which is your responsibility to know, they will know what those chances are with someone like you. So for some people, it makes sense simply to monitor a breast lump, while others should have it biopsied.

Because medical outcomes can be uncertain, determining the course is a matter of risk management. As Lickerman says, “[I]f you and your doctor thought through all the risks and benefits, you can content yourself you made the best decision with the data you had available at the time.”

Oleksyn is amazed at how many patients for whom she fills prescriptions are unaware of why their doctors prescribed the medication. “When someone doesn’t know what a medication is for,” she notes, “there is little motivation to take it correctly or even at all. Most drugs have more than one indicated use. Know what yours are being used for.”

2. What will happen if I don’t take this medication?

More than half of all prescribed medications are taken incorrectly or not at all. If you fail to take your high blood pressure pills, your chances of having a heart attack or damaging your kidneys increase. If you fail to take an antibiotic for a nasty cold, not much happens because antibiotics don’t address colds and, in fact, can be worse for you in the long run because they make microbes more resistant. Many prescriptions are unnecessary, and some prescriptions can be deadly if you do not take them exactly as prescribed.

3. When can I expect this medication to work for me?

The effects of some medication are felt in hours, some in weeks. Knowing what to expect is essential in order to remain compliant with the directions for its use. Depression meds might not start to work for as long as six weeks. But someone in acute pain deserves a medication that starts working in an hour or so; if it doesn’t, maybe the dose is incorrect. If you’re taking an antibiotic for a skin infection that keeps spreading after three days, you’re not supposed to wait for the 10-day course to be completed—you should be reassessed immediately.

4. What do I do if I have a problem with this medication?

Some problems and side effects can be addressed with minor changes in dose, timing, formulation or how you take the medication. Sometimes changing the medication is necessary.

Choosing a psychological therapist, we reminded readers in a blog post a few months ago, is no different from choosing other medical provider when it comes to asking pertinent questions. Link here to learn what to ask of potential counselors.

The popular media can be an excellent or terrible source of information about health and medicine. Consumers can navigate through the sloppy to the superior with the help of HealthNewsReview.org, a website that reviews and rates the quality of stories you see and read about. See our story, “Hype Busters: Helping You Get Better Care,” to learn more.

Martha Deed is exactly the person anyone would want as his or her patient advocate. A psychologist and member of the Consumers Union network of patient advocates, she is trained in patient advocacy and has a profound understanding of patient safety issues.

Yet when her own chronically ill daughter was subjected to a daunting cross-current of hospital specialists and treatment, even Deed felt like a sock being tossed around in an industrial washing machine.

She recently wrote about the experience on Sporkworld.org, and came away with valuable lessons for all.

As designated advocate for her 36-year-old daughter, Millie, who suffered from Behcet’s disease, an obscure autoimmune disorder, Deed had been through multiple medical emergencies and hospitalizations. She knew her daughter’s wishes, her response to various medications and her complicated medical history.

When Millie contracted a respiratory infection, few of Millie’s treatment providers had ever encountered a person with Behcet’s and none had ever spoken to her about how she wished her illness to be handled.

On admission to the hospital, Deed soon learned the limits of her superior knowledge. “I knew only what Millie’s previous illnesses had taught me. Each new hospitalization required a steep learning curve. [This] hospital was not treating Millie for Behcet’s. They were treating her in the ICU for respiratory failure due to swine flu. Behcet’s, to them, was an interesting side issue that they had little time for in an emergency.”

What ensued was a torturous adventure trying to communicate with uninformed professionals and coordinating care for two diseases whose treatment options often were contradictory. Medications that exacerbated Behcet’s were given to Millie without Deed’s knowledge, and sometimes in defiance of her directions.

If you do not have accurate information about your family member’s treatment, you cannot advocate effectively.

If staff does not accept documented medical facts about the patient, the hospital’s patient safety efforts may fail.

Patient safety personnel cannot work effectively if there are gaps in handling a patient’s concerns.

If you don’t know who is in charge, your concerns may not be addressed.

Before hospitalization, Deed recommends:1. Look up your local hospitals on your state health department’s website for information that might include the record of citations and corrective actions that have been taken against them by the Department of Health. 2. Look up results of patient satisfaction surveys for the hospital. Check for infection rates, medical errors and mortality and failure to rescue rates as reported by Medicare’s Hospital Compare.

If hospitalization is a surprise:1. Read the hospital’s orientation material carefully. Find out who is in charge of your loved one’s case. Be present for rounds by that physician. 2. Make sure that others are available to visit and comfort the patient if you are engaged in advocacy. 3. Have someone stay with the patient as close to 24/7 as possible--problems can occur day or night. Do not attempt to do it all by yourself. 4. Get some rest yourself so that you can remain helpful and clear thinking. 5. Keep a log so as not to lose track of what is happening with your loved one’s care. Include notes of any contact with medical staff. This can help prevent misunderstandings as well as mistakes. 6. The hospital probably prefers a single contact person. But that person—you, the patient advocate—can benefit from discussing the patient’s treatment with someone who knows the patient well and is trusted by him or her. The back-up can help identify communication or treatment gaps. 7. Be polite, even in an emergency in which you must engage the highest levels of hospital hierarchy.

The concept of coordinated care is considered a best practice, but in light of a recent survey and story by NPR, the Robert Wood Johnson Foundation and Harvard School of Public Health, it’s hardly a widespread one.

A few years ago, we wrote about what happens to hospital patients when the facility’s right hand doesn’t know what the left hand is doing. The story told how the lack of coordinated care resulted in 1 in 5 Medicare patients being readmitted to the hospital within 30 days.

Earlier this year, we reported that some health insurers are beginning to appreciate the wisdom of coordinating patient care in terms of both health outcomes and cost savings.

Coordinated care involves a therapeutic plan that integrates the efforts of all of the patient’s medical and social service providers. It might designate a single person to manage all of the collaborators or simply might be an understanding they share to ensure efficiency and communication. The point is to maximize resources, minimize duplicate procedures, reduce costs and, ideally, prevent harm.

That didn’t happen for Andrew Dasenbrock, one of the subjects detailed in the NPR story.

A 32-year-old a self-employed IT consultant, Dasenbrock says he can't afford health insurance. When he woke one night with intense stomach pain — "like shards of glass traveling through me," he said—he went to an urgent care center nearby. Doctors ran several tests, couldn’t settle on a diagnosis and sent him to the hospital.

The hospital was part of the same system, but its staff was not alerted to Dasenbrock’s arrival, nor were his records transferred. He was forced to fill out the same questionnaires and repeat all the same diagnostic tests. He remained in excruciating pain.

The hospital diagnosed an ailment that, while painful, wasn’t serious and required only that Dasenbrock ingest a lot of fluid. He went home. Two days later he received two bills totaling thousands of dollars.

"I laid the two bills next to each other and it was literally word for word, letter for letter and line item by line item the same charges ... for all the tests I had gone through," Dasenbrock said. He had to pay double what he should have for his care.

Another tale was told by Jacki Bronicki, whose father was 80. He had Parkinson’s disease, but the retired engineer and physics teacher was mentally acute and responding well to his treatment.

Last year he fell, broke three ribs and was admitted to the hospital. His mental state began to deteriorate by the second day. "He wasn't even coherent by the third day," Bronicki said.

Bronicki said that the parade of doctors who saw him seemed to assume that his confusion was, for him, normal, and reflected his age and condition. Bronicki said she had to explain to each new doctor that he had Parkinson's, that his mental deterioration was not his normal, that he usually was coherent.

Finally, a neurologist finally figured out that all the different doctors had prescribed different pain medications, and the drugs were interfering with Brown's Parkinson's medication. That caused his mental deterioration and made his limbs rigid.

His prescriptions were realigned, and he improved. But Bronicki and her sisters felt they had to remain at his hospital bedside 24 hours a day to prevent another medication error. And, she reported, "He has a lot more dementia than he had a year before. He can't walk anymore. And I'm not sure if it would have normally progressed like this, or if we really sped it up."

It wasn’t they who sped it up; more likely, it was the lack of communication and coordination among all of his caregivers.

Certainly, many of the survey respondents were pleased with their care. But of people hospitalized in the last 12 months:

30 percent said doctors, nurses and other health-care professionals communicated poorly with each other;

24 percent said doctors, nurses and other health-care professionals didn’t communicate information about their condition or treatment.

To prevent mistakes and unnecessary costs that result from uncoordinated care, ensure that in advance of your need for care by multiple parties, you and your loved ones have a patient advocate (read our article “Bring an Ally with You to the Doctor's Office”). Get and maintain a complete patient history, and make sure all of your care providers have it.

People diagnosed with diabetes quickly learn to test their own blood sugar levels several times a day using a home glucose kit. They also know that their periodic visits to a laboratory for tests measuring their A1C level should show a value no higher than 7, which is a widely accepted benchmark that the disorder is being well managed.

At least it used to.

These days, diabetes is among the disorders many enlightened practitioners are including in “patient-centered” care. That trendy term signifies the evolution of the practice of medicine that, along with a clinical diagnosis, embraces the individual’s circumstances and values to treat a disorder, and puts a priority on the sharing of medical decisions. That’s opposed to the traditional default of treatment based on technology, doctor preference/convenience, hospital equipment/protocol/location and the pure science of eradicating or ameliorating disease.

As explained in a story on NPR.org, “new diabetes management guidelines .. will cut many people with diabetes some slack.” The American Diabetes Association (ADA) officially now encourages diabetics and their doctors to determine an A1C level appropriate for each patient.

People who are diagnosed with Type 2 diabetes at a younger age reasonably might aim for a level of 7 or 6; older folks with accompanying heart disease might manage the disorder sufficiently if their level is 8, according to a study published in Diabetes Care.

"It it unrealistic to expect that everybody with diabetes should have the same goals and use the same medication," Vivian Fonseca, president of the ADA, told NPR.

As the director of one hospital diabetes center said, "It was a misguided public health concept that one number would make it easy for patients and doctors to remove the ambiguity and prevent diabetes complications. The problem is getting to goal safety and with patients' buy-in."

We’ve discussed the need for patients and doctors to craft a diabetes management program that acknowledges individual situations. But the new guidelines and the focus on customized care also shines a clarifying light on the knee-jerk use of diabetes drugs.

The ACP, NPR reports, advises some patients against taking certain drugs, and even directing them toward treatment from nonphysician competitors. There are lots of ways to manage diabetes, and taking drugs is only one. The patient-centered approach is part of what the organization calls “high value care.” Instead of taking vigorously marketed diabetes drugs such as Actos, Januvia and Avandia, Type 2 diabetics should opt first for an older generic drug.

The ACP recommends that the first choice for newly diagnosed diabetics should be metformin, a generic drug nearly 20 years old. A month’s supply of metformin costs about $14; a month’s supply of Actos runs $230-$370, and the cost for Januvia is about $265. According to ACP guidelines, metformin "lowers blood sugar levels more than newer drugs do.” It also reduces bad cholesterol; the newer drugs don’t, and sometimes they raise it.

Steve Weinberger, CEO of the ACP, told NPR that, "In these days of crisis in health care costs, the medical profession should take its ethical and professional responsibility to do what we can to reduce costs while not compromising care." He realizes that doing so requires fortitude, thanks to the financial incentives physicians often have to prescribe more expensive treatments. Hospitals also tend to supplant the simpler and less expensive with the newer and more remunerative care option.

If your doctor isn’t heading up a patient-centered diabetes team, maybe it’s time to find a new coach.

Rating things are all the rage, whether it’s semi-celebrities and their dance moves or food-truck burritos. Patients have always rated doctors, but until recently only in a casual, personal reference way.

Thanks to the changing landscape of health care and the increasingly important issue of cost-effectiveness, more codified attempts at consumer health care ratings are in order. As discussed on Wachter’s World, a blog written by Dr. Bob Wachter, chief of the Medical Service at the University of California, San Francisco Medical Center, consumers can check with Hospital Compare to see how certain hospitals are rated by patients.

Currently in development is a similar patient-feedback system for individual doctors.

Wachter believes that when data are gathered scientifically and professionally, everyone benefits. Unfortunately, the scientifically professional approach can’t compete with popular web-based ratings “in all their über-democratic, Yelpy glory,” Wachter says. And that makes some objections all the more righteous.

RateMDs, for example, was started by the fellow responsible for RateMyProfessors.com, which includes criteria such as “hotness.”

A more grown-up effort at doc-rating occurs in Britain, where the National Health Service hosts NHS Choices. It invites patients to rate practices and hospitals, but not individual doctors. Comments are screened (“inflammatory” comments are blocked) and practices are encouraged to post responses.

Reasonable objections to patient surveys of doctors include the fact that it’s human nature for the most disgruntled people to weigh in. That’s not a fair representation of whole-practice results. The fact that there was a relatively small number of responses by physicians skews the results even more.

But Wachter says the data reflect that most reviews are positive. Recently, of 386,000 physicians rated on RateMDs, nearly 1 in 2 was given a perfect 5 out of 5; only slightly more than 1 in 10 got 2 out of 5. And 2 in 3 patients responding to NHS Choices said they’d recommend a practice or hospital to a friend.

Another objection is that ratings would be insignificant—fluffy, not substantial. But that doesn’t seem to be supported by experience. In the RateMDs survey, board-certified physicians, those who attended highly rated medical schools and those who had never been sued for malpractice were rated higher.

Wachter was involved in a study of more than 10,000 patient ratings of hospitals for NHS Choices in which positive ratings correlated with lower mortality and readmissions rates. “While disentangling cause and effect is challenging,” Wachter writes, “these results support the notion that patient ratings are capturing other important elements of care.”

Wachter recalls a nurse’s recent New York Times commentary noting that, “[W]e hurt people because it’s the only way we know to make them better … which is why the growing focus on measuring ‘patient satisfaction’ as a way to judge the quality of a hospital’s care is worrisomely off the mark.”

But as Wachter notes, all medical practitioners have the capacity to hurt people on the road to getting them well, and some just do it with more compassion and grace than others. As he says, “I’d like to know who they are.”

What if people submit ratings only because they have an axe to grind? What if doctors write themselves glowing reviews?

Wachter says such concerns are legitimate, but that with large enough numbers, “the truth generally wins out. … The solution to problems with voting, it seems, is more voting.”

Wachter is most concerned about patients who would rate doctors poorly because they had refused to provide unnecessary or inappropriate care—for example, the patient who wants an antibiotic prescription for a sinus infection for which antibiotics are not the solution. “One hopes that future quality measures,” Wachter writes, “will include not only patient experiences but also other measures of appropriateness and evidence-based care designed to counteract this perverse incentive.”

“As we work our way through this new world of patient surveys and ratings,” Wachter concludes, “there will be some hazards to overcome and some unfair results to contend with. We’ll need to do all we can to anticipate these problems and mitigate them, and to try to bring some order to a chaotic marketplace. These seem like surmountable issues, and I am confident that the outcome of capturing the patient’s voice and giving it some real weight is sure to be better care.”

As reported on MedPage Today, in a hypothetical scenario, about 3 in 4 physicians incorrectly said that increased five-year survival and early detection of cancer proves that a screening test saves lives. About 8 in 10 correctly said that a reduction in mortality in a randomized trial proves the efficacy of a screening test.

According to the study authors, "Misunderstanding of statistics ... matters, because it may influence how physicians discuss screening with their patients or how they teach trainees."

The researchers explained how measuring survival rates can be subject to bias. In a group of individuals who will die at 70, the five-year survival rate for those diagnosed with cancer because of symptoms they had at 67 will be 0 percent. But the five-year survival rate for those diagnosed through screening at 60 will be 100 percent.

"Yet, despite this dramatic improvement in survival ... nothing has changed about how many people die or when," they said.

This is such a common error in medicine that it has a name: Lead time bias. Take two imaginary people, who are both destined by fate to die on the same day from the same type of cancer. One learns of his disease three years earlier than the other, thanks to a screening test. But the test only added three years of worry to his life. It did not extend his life span a single day. That is why medical researchers always look to see if a screening test results in lower mortality (death) rates from the disease being screened for. Increase in survival means nothing without that, since it can all be lead time bias.

Screening for cancer that ultimately does not progress (as is often the case with, say, prostate cancer) also can boost survival rates but not affect mortality.

But in a randomized trial, which is the basis for solid science, mortality rates aren’t affected by these biases. So that’s the only measure that can prove that a screening test saves lives.

If even doctors, who are trained in the science if not always the art of medicine, have trouble weighting the evidence when deciding whether or not to order a cancer screening, what’s a patient to do?

Ask questions:

Why are you recommending this test?

What are its risks?

What other ways are there to find out more about my problem?

What do you think will or could happen if I don’t have this test?

If your doctor isn’t interested in entertaining these questions, consider seeking another care provider. Also, our Better Health Care Newsletter from December can help you navigate these discussions, especially the article “Refusing Health Care Is OK, as Long as You Have the Facts.”

Diabetes is an affliction of modern life. Americans have abundant and relatively inexpensive food. We have a lack of interest and/or time for exercise. We are predisposed toward a high incidence of the disease and its devastating consequences.

Diabetes is a disorder of the metabolism. Its signature—high blood sugar—is the result of the body not producing enough insulin or the cells not properly using the insulin that is produced. It is nasty business: Diabetes can deprive people of their sight, their limbs, their lives.

There are three types: Type 1, commonly called juvenile diabetes because it presents early in life, requires insulin injections because the body just doesn’t make enough. Type 2, commonly called adult-onset diabetes, results from resistance to insulin—the body doesn’t use the hormone properly. Gestational diabetes occurs among woman without a history of diabetes but whose pregnancies raise their blood sugar; it can predispose them toward Type 2 diabetes.

Although genes play a role, adult-onset diabetes often results from lifestyle choices. As such, it’s the type that responds best to both medical and personal interventions. You’ve probably heard claims that many Type 2 diabetics who clean up their dietary act and get regular exercise can control, if not beat, this dread disease.

Maybe. But doctors at the American board of Internal Medicine analyzed which interventions had the biggest effect on diabetes patients, and they concluded that the best practice for diabetic patients involves significant physician involvement.

By comparing interventions—those that are managed by physicians (prescribing medicine for high blood pressure, for example) and those that are controlled by patients (eating a proper diet), they found that if the entire population of all U.S. patients diagnosed with diabetes met aggressive targets for lowering blood pressure, LDL cholesterol and blood glucose levels—all goals that must be monitored by doctors—they would have a 16 percent increase in quality-adjusted life-years and a nearly 23 percent reduction in 15-year mortality.

Diabetics who want to lead normal lives must take responsibility for understanding their disease and managing it to the best of their ability. But the team-based approach to treating diabetes clearly seems superior.

Another study, as reported on MedPage Today, supports this view. As stated in the Annals of Family Medicine, these researchers concluded that the involvement of nurse care managers working with patients and primary care physicians was associated with improved control of not only diabetes, but also depression and heart disease.

Even the most motivated diabetic can mismanage his or her medications, can struggle with adhering to rigid regimens and is subject to associated disorders—nearly 2 in 10 diabetes patients suffer from depression. The study examined a program called TEAMcare, a collaboration among a nurse care manager, physicians and patients that increased initiation of various types of medication, rates of treatment adjustment and self-monitoring by patients,

"Results of this trial suggest that improving specific patient and clinician behaviors (close monitoring of disease control parameters and timely treatment adjustments to achieve individualized goals) can improve disease control and quality of life among patients with multiple conditions and complex healthcare needs," the researchers wrote.

As MedPage noted, it’s difficult to exercise good disease control for patients with multiple chronic diseases because they often have multiple doctors, complex treatment regimens and a higher risk of harmful drug interactions. Depression exacerbates these challenges.

So if you or someone close to you has diabetes, read about standards of medical practice for diabetes here on our site. Make sure all of your care providers are aware of what you’re doing apart from their particular focus. Are your primary care doctor and endocrinologist doctors aware of your nutrition and exercise habits? Do your doctors and pharmacists have current records of all the medications you’re taking and are they aware if you’re struggling to adhere to their respective prescriptions? Are they aware if your depression is sapping the energy you need to exercise?

Although the consequences of medical malpractice are often clear, devastating and sometimes irreparable, malpractice is not always the result of a mistake a doctor or hospital makes during treatment of disease or disorder. Sometimes, the problem lies in the communication of information, or failure to communicate.

A recent study published in JACR – Journal of the American College of Radiology – concluded that the risk of a malpractice lawsuit can increase when the notification of diagnostic test results breaks down between a referring doctor and a treating doctor.

Let’s say a primary care doctor refers a patient to a surgeon. Standard medical practice is for the surgeon, or treating physician, to ensure that the primary care doc is given the results of examinations and/or diagnostic tests if they yield an urgent or unexpected finding. And, commonly, even if they don’t. After all, a primary care doctor knows the patient best, and is considered the “gatekeeper” of a patient’s overall health-care profile and treatment.

The JACR study showed that in recent years, clinicians have ordered dramatically greater numbers of diagnostic examinations. Between 1996 and 2003, malpractice payments related to diagnoses increased by approximately 40 percent. “Communication failures, the authors said, “are a prominent cause of action in medical malpractice litigation. … [C]laims payments increased at the national level by an average of $4.7 million annually. …[C]laims data for 2004 to 2008 indicate that communication failures played a role, accounting for … 7 percent of the total cost.”

These numbers, the study suggests, might reflect the fact that people assume medical data is being reliably communicated among caregivers when sometimes it isn’t. It might reflect the remarkable growth of diagnostic testing, which generates a lot more test reports, some of which are invariably not going to be sent to every caregiver a patient sees. Whatever the reason(s), researchers concluded, “If notification reliability remained unchanged, this increased volume would predict more failed notifications.”

The researchers advise the implementation of “semiautomated critical test result management systems” to improve notification reliability, workflow, patient safety, and, in the event of a lawsuit, to provide legal documentation.

We advise that any patient who undergoes an examination or diagnostic test—X-ray, CT scan, MRI, lab work, etc.—administered by a doctor other than his or her primary caregiver request that a copy of the report and/or results be sent to the primary caregiver. And any other specialist who has participated in the patient’s care for this particular problem. Call your doctor(s) a week or 10 days after the specialist has your results to ensure they have received them.

And as always, we recommend that patients get copies of any test reports themselves. That is the ultimate preventive measure against communication failures.

We’re big believers in “evidence-based” medicine. Most recently, we questioned the fuzzy-science circumstances surrounding the death of Steve Jobs. But a recent article in The Atlantic by Megan McArdle reminds us that, sometimes, the art of medicine should play as large a role as that of science and that, ultimately, striking that balance requires the patient and the doctor to communicate well.

McArdle’s TSH levels were at the edge of the new, narrower range, and she had many of the symptoms associated with “underactive” thyroid—hair loss, fatigue, hoarseness, constantly feeling cold. (Overactive thyroid symptoms include insomnia, nervousness, heart palpitations, increased risk of bone fracture and a host of unpleasant and health-threatening problems.)

Her problem was that the numbers, the science, didn’t indicate how bad she was starting to feel.

The treatment for an underactive thyroid (hypothroidism) is a drug—thyroid hormone. And, like all drugs, it’s not without risk, so practitioners prescribe the lowest dosage possible to avoid them. As McArdle eloquently puts it, “There are real risks to taking too much thyroid hormone—it can cause heart palpitations and increase your risk of fractures. Unfortunately, too little thyroid hormone can leave you fat, bald, constipated, and depressed.”

Conservative TSH guidelines err on the side of hypothyroidism, McArdle writes, because “being hyperthyroid can kill you, while being hypothyroid just, well, makes you fat, bald, constipated, and depressed.” As long as TSH levels are under 5, many doctors believe, you are being treated appropriately, no matter how you feel.

Many primary care doctors have yet to adopt the more stringent levels recommended by the endocrinologists association, McArdle says, and even those whose patients’ blood tests show the new normal of 3 sometimes suggest these overweight, sluggish, cold people should just overcome their vanity or go to the gym more often.

“I can understand why doctors want to stick to the number: it is objective, while ‘I'm tired and kinda blue’ is not,” McArdle writes. “And presumably, you will get idiot patients who want to be thinner than is natural for them, and will lie about their symptoms in order to be prescribed dangerous levels of thyroid hormone.

"But this is not much comfort to the thyroid patient struggling to get enough energy to make it through the day.”

Which brings us back to the limitations of “evidence-based” medicine and the need for respectful, constant communication between patients and their doctors. “Evidence-based medicine works best on things that are very easy to measure, like blood levels.” McArdle says. “It is very easy to tell whether a statin reduces blood cholesterol levels. It took a lot longer to tell whether it actually reduced heart attacks.

“The more we rely on a central board to make decisions for huge numbers of people, the more tempted we are going to be to rely on metrics which can be collected, aggregated and mined for data. Where does that leave the thyroid patient with ‘normal’ blood levels . . . and a collection of vague, frustrating—but nonetheless very real--symptoms?”

McArdle found an endocrinologist willing to treat her more aggressively than mere numbers indicated to many of his colleagues. Three weeks after beginning her hormone regiment, she wasn't so cold any more and her voice lost its scratchiness.

“I don't want to come out against evidence-based medicine; we should always be trying to figure out what works and what doesn't,” she writes. “But I do question what constitutes evidence. Will evidence-based medicine push us even more towards looking at numbers rather than listening to patients?”

If you believe your care provider has caused serious harm by negligence or malpractice, consult an attorney about legal relief. But that’s using a machete, and sometimes the job requires a butter knife.

If you have a medical procedure – surgery, a screening test – whose outcome is not what you were led to expect, or has made you worse off, there are several ways to lodge complaints. Many of these options recently were spelled out in an article in the Los Angeles Times.

Often, as simple a gesture as writing a letter can have the desired effect, especially if your primary objective is to have your problem acknowledged. If you’ve expressed concern, for example, about enduring, post-procedure pain that hasn’t been addressed, a letter to your doctor seeking the name of another practitioner who can evaluate your symptoms, review the procedure that caused them and suggest how to treat it can be a wake-up call.

As The Times reported, a doctor no longer interested in treating a patient is legally required to notify him or her in writing. The doctor also is obliged to provide references to another physician, and instruct the patient or new provider how to access the records relevant to your treatment.

If you’re trying to get, say, a surgeon, to accept responsibility for an adverse outcome, Dr. Michael Carome, deputy director of the Health Research Group at Public Citizen in Washington, D.C., outlines what to do. “Failure to do so,” he said in The Times, “amounts to patient abandonment, an infraction that would justify an investigation by the state medical board.”

Most state medical boards – the agencies responsible for licensing medical practitioners, monitoring their behavior and imposing discipline – have similar provider requirements. Jennifer Simoes of California’s Medical Board said that a patient should file a complaint if he or she “believes the quality of care that they received was poor or not the standard of care they should have received."

Other state agencies also are appropriate places to report medical mistreatment and misadventure, such as state insurance commissions, which monitor health-care coverage by private insurers. Complain to your insurance company via letter, and copy your state insurance commission.

Medical societies, which range from all-encompassing organizations such as the American Medical Association (AMA) to groups whose membership is limited to certain medical specialties, such as the American Academy of Orthopedic Surgeons (AAOS), are concerned about their reputations. It’s in their best interest to ensure their members are responsive to patient needs and complaints.

To find a state medical society, visit the AMA’s website and click on the “Patients” tab to link to the Medical Societies Directories.

If your problem relates to a surgery or procedure performed in a hospital, file a complaint with that facility’s patient advocate and, if it has one, the ombudsman. Many hospitals are accredited by the Joint Commission, about which we recently wrote. It’s an independent, nonprofit organization that accredits and certifies U.S. health-care organizations and programs.

The Joint Commission also accepts patient complaints, and its Office of Quality Monitoring uses consumer complaints to help assess if a hospital meets its accreditation standards. In The Times’ story, Michael Kulczycki, executive director of the Joint Commission's Ambulatory Care Accreditation Program, said of patient complaints, "We would focus on the continuity of care and appropriate follow-up to the patient."

File complaints at http://www.jointcommission.org. Click on Report a Complaint About a Health Care Organization in the Action Center box on the home page. After reviewing a complaint, the Joint Commission can present your issue to the hospital and ask it to review the doctor’s actions to see if additional action is necessary.

Medicare patients have additional avenues to voice complaints. Contact your regional Medicare Quality Improvement Organization (QIO), which reviews medical care and helps consumers who complain about the quality of their care. Locate a QIO near you at http://www.ahqa.org. Click on QIO Locator.

As always, you have legal rights to safe and responsible medical care. Don’t be reluctant to exercise them if you’re not getting the attention, professional courtesy and resolution you believe you deserve. As Carome said in The Times, "Ultimately another way physicians are held accountable is through litigation."

The per-capita U.S. expenditure for health care is twice that of the average industrialized nation, and it’s growing at an undsustainable rate. One reason for that grim reality, says a survey of doctors in the Archives of Internal Medicine, is that a considerable amount of health care is unnecessary. Patients, they say, get too much care.

You can’t read a big-city newspaper without encountering stories about people without adequate medical insurance going without medical care. But folks being overtreated? Not so much.

Nearly half of the of the 440-some respondents believe their own patients receive too much care, and just more than half believe the amount of care is just right. Nearly 3 in 10 said they were practicing more aggressive medicine than they would like.

They gave three primary reasons for their indulgent care:

concern over malpractice lawsuits (that is, if you overtreat, accusations that your care was wanting lose their punch);

clinical performance measures (that is, you have to “prove” your worth); and

inadequate time to spend with patients (that is, if you don’t have time for people, give them tests and treatments to fill the void of communication).

The study concluded that “physicians are open to practicing more conservatively,” and that “physicians believe they are paid to do more and exposed to legal punishment if they do less. Reimbursement systems should encourage longer primarly care physician visits and telephone, email and nursing follow-up, rather than diagnostic intensity.”

In an accompanying commentary to the study, Dr. Calvin Chou sees “a kind of trained helplessness” in the physicians’ responses. They practice aggressively because they have no recourse.

Chou suggests that doctors address the problem through communication and by avoiding burnout.

His reflection mirrors our feelings. As far as avoiding burnout, well, we’re not career counselors, but we do understand the value of communicating with patients. Larding unnecessary tests and treatments into patient care is like giving kids expensive toys and too much sugar when you don’t have time sit down and go over their homework. It’s a replacement for time, and it’s not without side effects.

We also believe the concern about malpractice lawsuits causing defensive medicine is off target. When patients sue for not having been tested enough, it's because a simple test was available that could have headed off the catastrophe which then occurred.

There's no "defensive medicine" in ordering the right test, and it's perverse to suggest that a doctor might only order a valuable test on a patient because of the threat of being sued if he doesn't.

Choosing a medical caregiver, like any good consumer behavior, involves comparison shopping.

Mindful of the restrictions of your health-care plan, cost, geography and/or time, choosing a psychological therapist is no different from choosing any other medical provider. In some ways, it’s even more important to have a good match between doctor and patient, because for most people, the mind is the most difficult body part to open to scrutiny.

Writing on PsychCentral.com, clinical psychologist Charles H. Elliott offers therapy shoppers several tips to ensure a good marriage between therapist and patient.

A range of factors can undermine the therapeutic relationship. Maybe the therapist reminds you of someone you dislike or with whom you have an uncomfortable history. Maybe you don’t even know why it just doesn’t feel right.

It doesn’t matter, Elliott advises, whether or not you can identify a reason for a rocky relationship. The fact that you’re uncomfortable is reason enough to question whether a practitioner is the right one for you. If he or she isn’t, you’re not getting the best care.

After a couple of sessions, ask yourself these questions in order to assess if the match seems to promise a successful outcome:

Do I feel at ease in discussing almost anything with my therapist that I feel is important?

Do I feel safe when I’m talking with my therapist?

Does it seem like my therapist understands and truly hears what I have to say?

Does my therapist look interested in what I have to say?

Do my therapists’ reactions to what I say feel nonjudgmental and uncritical?

Does it feel like my therapist cares about me and my problems?

If you’re uncertain about several answers, or if any one is a strong “no,” that’s a clue to discuss your concerns with your therapist. If he or she is defensive or evasive, if the discussion makes you feel uncomfortable, you probably need a different caregiver.

The one exception is if you have relationship problems in general, and struggle to feel safe talking even with close friends or family. That’s a tip that communication/relationship issues should be part of the therapy itself.

In theory, people support the presence of trainees for medical procedures. But when it comes to personal practice … not so much.

So says a study in the Archives of Surgery, which examined patient perceptions and willingness to participate in resident education. More than 8 in 10 patients consented to having an intern participate in their surgical procedure, and more than 9 in 10 consented to the presence of a resident. But when presented with a real situation of trainee participation, not even 1 in 5 said OK.

More than half of the survey respondents said that knowing that their operation was a trainee’s first would affect their consent negatively.

As explained on MedPage Today, in the 1980s surgeons thwarted proposed legislation to mandate “informed consent” when trainees were involved in a patient’s procedure. The docs had argued that such patient consent referred only to the “responsible” surgeon who provides supervision and oversight. Today, the study’s researchers noted, it’s still common practice not to inform patients of trainee participation.

In an accompanying commentary to the study, Ali Salim, M.D., wrote “"As part of [the informed consent] discussion, it seems obvious that patients would want the extent of involvement of surgical trainees during a surgical procedure to be disclosed, but current ethical and legal requirements for informed consent for care by trainees have not been well elucidated."

If that just seems wrong, the writers concur that full disclosure of trainee participation would affect their education negatively, because patients might refuse permission for them to participate in their care. More than 8 in 10 survey respondents indicated they wanted to be informed about trainee participation.

So here’s the quandary: Medical students can’t learn how to be good doctors without hands-on training, and although patients understand that, they don’t want to be the individual guinea pigs. The authors suggested that patients should be better educated about the nature of a teaching hospital and the benefits for patients to have trainees participating in procedures. But they remain wary about full, mandatory informed consent.

"We believe that broad calls for routine mandated disclosure should be carefully planned and analyzed prior to implementation to avoid any adverse effects on surgical training," they concluded.

Putting the care back into medical care is the aim of a $42 million grant from a couple to the University of Chicago. Sometimes trivialized as "bedside manner," the issue of compassion and caring is central to what so many of us patients see as the lost piece of modern medical treatment.

The new Bucksbaum Institute for Clinical Excellence will be led by Dr. Mark Siegler, a medical ethicist and general practitioner who inspired the gift from Carolyn and Matthew Bucksbaum. Dr. Siegler's words are borrowed for the headline on this blog piece. His distinguishing attributes include listing his cell phone number on his business card, making house calls, and treating his office staff as colleagues and not underlings.

Pharmaceutical companies love dish about doctors and patients almost as much as they love drug profits. One source of information they like to plunder to expand their markets is doctors’ prescribing histories. These “who,” “what,” “why” reports are one component of so-called “data mining” that has gotten much attention lately as a sometimes sneaky way to unearth potentially sensitive information.

The companies buy the reports from prescription drug intermediary (PDI) agencies that, as explained in an article in the New England Journal of Medicine, collect the prescription records from pharmacies and link them to physician information purchased from the American Medical Association.

Pharma sales representatives crunch the numbers in order to refine their sales pitches when they visit doctors’ offices. Critics of this process, known as “detailing,” claim that it:

raises costs by increasing the use of brand-name drugs;

jeopardizes patient safety through wider uses of drugs that haven't been studied appropriately; and

compromises the privacy of doctors and their patients.

As the NEJM writers note, several states have passed laws to curtail detailing and restrict PDIs from providing prescribing information that identifies physicians. One PDI/pharma effort challenged a law in Vermont that prohibited pharmacies and PDIs from selling/licensing/exchanging prescriber-identifiable prescription information and from permitting its use for drug promotion. The case ended up in the U.S. Supreme Court on the claim that it unconstitutionally restricted free speech.

How information that is supposed to be private between a doctor and a patient can qualify as free speech seems preposterous on its face, but the court ruled in favor of the commercial interests in a long and carefully parsed finding that Vermont was biased against detailers and their free speech.

The authors of the NEJM article looked at both sides of the issue. “If laws like Vermont’s were to become widespread,” they wrote, “they would undercut pharmaceutical companies’ ability to detail physicians effectively, with the probable consequence that detailing would be greatly reduced. Although this outcome might well reduce the cost of prescription drugs, it would also reduce the amount of information that doctors receive. … detailing can have educational value. For all its problems, detailing — like its troublesome cousin, direct-to-consumer advertising — is probably of some benefit to patients.”

They explain that PDI databases are used to benefit public health as research material, and if PDIs were deprived of data-mining income, they might not invest in keeping such complete records. They also explain that landmark legislation to protect patient privacy remains strong. “[T]he Court defended the patient privacy provisions of the Health Insurance Portability and Accountability Act (HIPAA) of 1996, noting that HIPAA imposed a general ban on disclosure except in ‘a few narrow and well-justified circumstances.’ Although the Court did little to define the boundary between unconstitutional laws such as Vermont’s and sacrosanct ones such as HIPAA, it is clear that some restrictions on data sales will, if tailored finely and fueled by strong governmental interests, survive.”

The writers suggest that data-mining prohibitions could survive judicial scrutiny if they:

broaden the ban so as not to finger only drug marketers; and

sharpen the focus on privacy issues.

In other words, the authors found reason for hope that this one decision does not establish an impenetrable precedent for commerce to boost drug costs, pose a threat to public safety and invade private files.

Of course, doctors can always close their doors to sales reps, but that’s more pipe dream than likelihood. Because even if doctors are as loath to open their files to Big Pharma as the industry is hungry for the information, and even if doctors know that a sales pitch is less than objective, they still can learn something new, and they value the free samples.

If you’re concerned about this issue, and your doctor prescribes a drug:

Ask if there is a generic option, and if it’s suitable for you.

Ask if he or she embraces the AMA’s Physician Data Restriction Program (PDRP), which allows doctors to withhold prescribing data from sales reps but still share it for research purposes. According the NEJM, only 4% of physicians have signed on, probably because “the AMA’s financial interests cut against strongly promoting the program.”

Tell him or her that you’re uncomfortable with your drug history being shared, and request that he or she not entertain pharmaceutical sales calls.

These measures alone probably won’t change anybody’s practice, but they will let your caregiver know that you’re informed and concerned. And that you can always find another doctor.

If you believe the stereotype, surgery isn't a warm and fuzzy medical specialty (that would be family doctors), it's a cold, clinical engineering-like pursuit. And a surgeon is more likely to be known as "the knife" than "the smile."

The head of one major transplant center, however, would like to rearrange the stereotypical furniture. Says Andrew Klein, M.D., "Operating rooms are social environments where everyone must work together for the patient's benefit. When a surgeon, who is in the position of power, is rude and belittles the rest of the staff, it affects everything."

Klein and Pier Forni, Ph.D., authors of an article about civility and medicine in the Archives of Surgery, said an operating room is a crucible of stress that can manifest in bad personal behavior that isn't good for anybody. They acknowledge that scientific studies are reinforcing perceptions that outcomes improve when the surgical team cooperates.

As reported in MedPage Today, Klein and Forni found that rancor and the rudeness it engenders may be tied to heart disease and depression. They point to one study that deemed that "high-risk" uncivil behavior in the surgical suite increased the risk of postoperative death and complications.

The incivility extends beyond the OR and so do its side effects. In one study, 96% of nurses for the Department of Veterans Affairs' reported witnessing disruptive physician behavior. A survey by the Institute for Safe Medication Practices showed that 75% of nurses sought a co-worker's help to understand a confusing physician's order because they didn't want to interact with the doctor themselves. Seven percent of the nurses blamed doctor intimidation for medication errors.

In their article, Klein and Forni lobby for surgeons and OR teams "to lead a civility initiative in healthcare." That includes reviewing hiring criteria for surgical employees to look beyond the traditional standards of "accomplishments, knowledge, training, and productivity" in the hope of identifying ways in which prospective candidates can be assessed for how they function in a social environment.

"The temptation to ignore warning signs that a surgeon will not play well in the sandbox with peers and co-workers is seductive when large clinical practices and (National Institutes of Health) funding are at stake," Klein said.

Like other workplaces, the writers suggest, hospitals should develop a code of conduct for medical and administrative staff. They also champion the idea of cultivating relationships at work, because a culture of caring fosters loyalty.

If your doctor, your nurses, your patient advocate cooperate and have empathy for each other's professional roles and responsibitlities, your care will improve. Ask if the hospital where you are scheduled to be treated has a code of conduct. As a patient, you should not tolerate rude behavior among the people caring for you. If you don't think someone on your care team is being treated properly, speak up. It's the right thing to do for her, and the best thing for you.

Only someone who suffers from asthma can understand the panic that comes with a sudden attack that feels as though you’re suffocating. Many such victims reach for an inhaler to dispense the drug albuterol, which provides lung relief.

Now, a new study published in the New England Journal of Medicine confirms not only the drug’s benefit, but a whole lot more -- about how caring can enhance treatment.

It found that asthma patients given a placebo (inert drug, aka fake treatment) or no treatment felt better despite measurable differences in lung function improvement as compared with those receiving drug treatment.

One of the study’s authors, Ted J. Kaptchuk, associate professor of medicine at Harvard Medical School, described for WebMD the elegance of the research: "Disease is what doctors search for--the underlying physical thing they can detect with labs and imaging and can express in hard numbers," he said. "Illness is what a patient experiences. ...There is a difference between what doctors find and what patients experience."

What the asthma study demonstrates is that making patients better requires treating illness as well as treating disease. Thirty-nine asthma patients stopped taking the drugs prescribed for their condition. Then they randomly underwent four different regimens during which lung function was tested regularly. They were:

treatment with an albuterol inhaler;

treatment with an inhaler with no active drug (a placebo);

treatment with bogus acupuncture (the device appeared to puncture the skin like acupuncture needles, but didn’t); and

no treatment.

As expected, the albuterol treatment registered improved lung function by 20%. And not unexpected was that the placebo treatments improved lung function somewhat--7%. It was interesting that patients who got no treatment also improved by 7%.

But truly surprising was how patients reported their condition. Asked how much better they felt, they said 50% better with the albuterol; 46% better after fake acupuncture and 45% better after using the inert inhaler. The latter two positive reports could be attributed to the “placebo effect,” which is often seen among study subjects who don’t know that they’re not receiving the real McCoy. But even after knowingly receiving no treatment, they said they felt 21% better.

As lead study author Michael E. Wechsler, M.D. told WebMD, "with this study we saw that part of taking care of the discomfort … is being there. …There is definitely some mind-body interaction in asthma that relates to the shortness of breath that patients feel."

People who study the placebo effect draw a distinction between objective medical outcomes (in this study, lung function) and the subjective medical outcomes of patient-based feelings (in this study, less shortness of breath).

They hope to raise consciousness that, sometimes, medical research dismisses subjective results to overwhelmingly favor objective results. But the artful practice of medicine addresses the reason for the suffering as well as the suffering itself.

That said, it would be foolish to ignore the whole picture painted by the asthma study. Treatment with a proven drug clearly resulted in superior lung function. And without the availability of that treatment, people will experience preventable asthma attacks. The goal is for patients to receive medical treatment and medical care.

As if the doctor-patient relationship isn't one-sided enough, the subservience patients often feel can be made even worse when you must wait way beyond the appointed time for your consultation.

For some patients, time is money, and for all patients whose doctors assume the doctor's time is more important than yours, extended waiting is disrespect. One study last year pegged the average wait time at doctors' offices in the United States at 24 minutes.

Everyone understands that medicine is fraught with emergency, and sometimes a physician simply must accommodate an unexpected patient. But some doctors are never on time; for them, running late is business as usual.

Others are told by superiors and insurance companies to book consultations at 15- or 20-minute intervals; if one patient has more than one problem, or a complication arises that requires 30 minutes' time, every patient after her will be seen late. So, does the doctor cut off the appointment in order to maintain the schedule, or does she meet the medical need at the risk of making everyone else late?

As doctors are increasingly besieged with paperwork demands and lower fees from Medicaid and Medicare, is it fair for patients to expect prompt service? Apart from making a scene, is there recourse when your 10 a.m. appointment begins just before lunch?

Some patients, according to several recent reports including one on CNN, are turning rude behavior into financial penalty. They're invoicing tardy physicians for time spent cooling their heels in the waiting or exam room. And physicians are paying.

Not too long ago, doctors would have scoffed at the idea of reimbursing patients for time spent waiting. But some told CNN they give patients money or a gift, sometimes even without being asked.

"I love this!" Dave deBronkart, co-chair of the Society for Participatory Medicine, told the network. "It's magnificent that some physicians are valuing patients' time. It's a commitment to designing a practice that truly serves patients."

Others ... not so much. One woman left her doctor's office at 8:40 when the gynecologist hadn't shown up for her 8:00 a.m. appointment. Encountering the doctor in the parking lot, the patient asked about the delay. "The doctor told me she had a little one and she was never in the office until ten to nine," she remembers. "I asked her why she scheduled appointments at 8 a.m., and she said to give the patients time to do paperwork. I was so mad I was shaking. I never went back to her."

DeBronkart blogged at E-Patient Dave when he waited 45 minutes for an X-ray. He told CNN that the head of the radiology practice later called and acknowledged the need to change how they scheduled patients.

Some physicians have seen the patient-waiting light, and are doing their best to ensure it isn't red. MedPage Today reported about one who offers Starbucks gift cards and text messages patients if he's running behind. Another, who practices boutique medicine, books only about 10 patients per day for at least 30 minutes each and charges a $125 annual fee per family for the convenience. If he is late, he pays $25.

The MedPage story makes clear that it's easier for some practices, such as surgery, to run more efficiently than a primary care office. Offices at greater risk of being late can address the problem and possibly mollify patients by:

One patient who tries to turn waiting time into work time is concerned that if billing tardy doctors becomes fashionable they will start charging everyone more. They should focus on prevention, he says.

As a patient, you can minimize your likelihood of a shortened fuse from a longer wait by:

scheduling your appointment at the beginning of the day or right after lunch;

locating doctors with demonstrable on-time practices via an organization such as Ideal Medical Practice, which identifies superior practices; and

putting a value on your time and invoicing your doctor for an unreasonably long wait.

Want to go to medical school? How well do you listen? How well do you work in a team? Those issues are now being tested by the nation's newest medical school in screening applicants.

This is not just a matter of touchy-feely. Preventable deaths and malpractice have been proven to happen all too often when arrogance trumps smooth teamwork and easy communication among members of medical teams.

But testing communication skills is not so easy. So in the new testing regime created by the leaders of Virginia Tech Carilion medical school, medical school applicants are given a series of quick, speed-dating type interviews where they have to show how they respond to real world scenarios that require good communication and teamwork skills.

A pleasant bedside manner and an attentive ear have always been desirable traits in doctors, of course, but two trends have led school administrators to make the hunt for these qualities a priority. The first is a growing catalog of studies that pin the blame for an appalling share of preventable deaths on poor communication among doctors, patients and nurses that often results because some doctors, while technically competent, are socially inept.

The second and related trend is that medicine is evolving from an individual to a team sport. Solo medical practices are disappearing. In their place, large health systems — encouraged by new government policies — are creating teams to provide care coordinated across disciplines. The strength of such teams often has more to do with communication than the technical competence of any one member.

Chances are, you or a family member has been the beneficiary of a freebie from the doctor’s office, and we don’t mean a cherry lollipop when the kids got their tetanus booster. We’re talking drugs, often of the prescription variety, that a pharmaceutical representative has left after a marketing visit to the doctor’s office. "Samples," they're called.

We've covered the dangers and the hidden costs of "samples" for both doctor and patient previously in this blog, Today's topic is a little broader: the many tentacles of the pharmaceutical industry that reach into the doctor's office and that can affect the care you and your loved ones get. More specifically, there is a possible pay-for-play attitude that’s harder for doctors to resist as medical costs continue their upward thrust and doctors say they feel increasingly marginalized.

In “Doctor Compensation and Industry Influence,” writer Ed Silverman notes that “The ongoing controversy over financial ties between physicians and the pharmaceutical industry centers, of course, on concerns that medical practice may be unduly influenced,” and that doctors are indignant that people could believe their medical judgment would be influenced by swag. But many doctors are unhappy with their compensation, citing costly and lengthy education and training, stressful and protracted relations with insurance companies, rising malpractice insurance premiums and patients armed with an Internet medical degree and questions about diagnoses and treatment.

There’s a lot going on here, and although much of doctors’ dissatisfaction is righteous, it’s unfair for them to expect patients to:

be sympathetic about the costs of an education they chose to pursue;
suffer their ill will in the face of greedy or incompetent insurance companies; and
simply accept that mistakes will be made and that retaining legal counsel is disloyal and unfair.

And it’s just flat-out arrogant and dismissive for physicians to prefer patients who never ask questions, who aren’t invested in their own health care and whose default is to defer to the guy in the white coat because he’s over-educated and underpaid. That’s not good for the patient or, ultimately, the practice of medicine.

A recent survey by Medscape, “Do doctors earn enough?”, generated a robust response within the medical community, and not necessarily for the numbers report (orthopedic surgeons and radiologists earn the most--$350,000 median income—and pediatricians the least-- $148,000 median), but for the ancillary issues.

Responding to the survey in “Mo money mo problems,” physician Sean Pannick drew a line of clarity for parties on both sides of the worth issue: “Doctors should look at their income and ask themselves--and their patients--whether it fairly reflects the quality of their work. Patients, on the other hand, also need to be mindful of the financial component to the doctor-patient relationship. They may not know (or want to know) that money matters when it comes to doctors, who often profit more from a series of tests and procedures than a simple clinical assessment. Conversations in the consulting room already mask a number of hidden agendas, and the issue of renumeration (sic) is another one that lurks beneath the surface.”

Absent a truly malfeasant practitioner, the quality of care a patient receives from his or her doctor probably isn’t influenced markedly by occasional, reasonable attention from members of the medical industrial complex with something to sell. But it might be affected by the efficiency of ordering a test over the harder work of having a conversation.

It is your duty to yourself and your loved ones to get the best possible care, and that means asking questions. If you wonder if your doctor has gotten paid to represent a medical product or service, ask. If you have read something on the Internet that might relate to the problem you’re presenting in the exam room, broach the subject. If your doctor is too busy, distracted or feeling too undercompensated to engage, it’s time to go doctor shopping.

It’s bad enough when a treatment goes so wrong a patient has to sue to get financial compensation for the physician’s malpractice, but what if the physician has no liability insurance and the judgment can’t be collected? For Georgia residents, this no longer poses a problem, because under a new law that may be the first of its kind in the U.S., physicians must disclose whether or not they are covered by medical liability insurance.

According to the law, which was signed by Georgia Governor Nathan Deal last month, physicians are required to inform the Georgia Composite Medical Board if they are insured. The board will make the information available on its website as part of a physician's public profile. In addition, doctors also must disclose whether they are covered by insurance when asked by patients. If the physician declines to inform his patients, the result could be disciplinary action by the board.

"The patient has a right to know if a physician carries malpractice insurance," says Rep. Ben Watson, MD, who sponsored the measure. "This is part of how a patient can judge a physician."

The Medical Association of Georgia, which represents physicians in Georgia, supported the bill. The vast majority of Georgia’s nearly 18,000 physicians have liability insurance.

The Georgia law may be the first of its kind to add "insurance coverage" to the list of public disclosures required of physicians. Last month, the Illinois Assembly passed a similar bill, but it has yet to be signed into law.

Every patient and every doctor know that delivering bad news is something that physicians sometimes have to do. But too many doctors don't realize that the way they communicate can cause terrible and needless emotional injury.

A flat, heartless delivery of bad news can make patients feel abandoned and devastated. A touch of compassion, on the other hand, may not extend a patient's life by a single day, but does make them feel that they are still part of the community of the living.

Patient advocates say that Compassion is one of the four C's that patients have a right to expect. (The others are: Competence, Communication and Convenience.)

William Branch, an internist and professor at Emory University School of Medicine in Atlanta, has conducted studies for two decades to determine if physicians can be taught to be more compassionate.

Dr. Branch maintains that “our healthcare system does not lack compassion,” and that compassion can be taught, though not in a single training session.

In research conducted at five medical schools in 2009, Branch studied two sets of faculty members on their compassion skills as evaluated by their medical students and residents. The students watched the faculty members interact with patients, and they scored those interactions plus the quality of their direct teaching of caring skills.

One faculty group underwent a two-year program that combined experiential learning of skills such as role modeling along with reflective exploration of values through writing narratives and other activities. The other group had no intervention. The study found that the compassion-training group rated significantly more compassionate with their patients.

However, just as it can be taught, compassion also can be lost. A 2008 study of 419 medical students showed that women had twice the empathy scores of men and that scores declined at the end of the third year, when students had begun regular exposure to patients during clinical rotations — exactly at the point where they needed more, not less, empathy. But this trend can be prevented; another study of 209 students at the Robert Wood Johnson Medical School found that empathy was maintained among third-year students who received specialized training.

Physicians, researchers, drug makers and regulators should pay more attention to patients’ first-hand reports of their symptoms while they take medicines because their information could uncover safety problems and guide treatment and research, a cancer researcher says.

In an article in the New England Journal of Medicine, Dr. Ethan Basch, an oncologist who treats men with prostate cancer at Memorial Sloan-Kettering Cancer Center in New York, writes that direct reports from patients are rarely used during drug approval or in clinical trials, and, when patients’ comments are sought at all, they are usually filtered through doctors and nurses, who write their own impressions of what the patients are feeling.

In addition, physicians and nurses “systematically downgrade the severity of patients’ symptoms” and sometimes miss side effects altogether. One result is “preventable adverse events” — for instance, suicidal thoughts in young people taking antidepressants, or severe constipation in people taking a drug for irritable bowel syndrome, both of which might have been detected earlier if symptoms had been systematically tracked.

Basch first studied people who receive chemotherapy, comparing symptom reports by patients with those from doctors and nurses and found that for every problem — fatigue, nausea, appetite loss, vomiting, diarrhea, constipation — patients reported it earlier and more often than did doctors and nurses.

The tendency to downplay symptoms may be based on the doctor’s knowledge that a patient is in the early stages of an illness and could be much worse. Or the doctor may be making mental comparisons with other patients who are sicker.

Sometimes, the downgrading may reflect wishful thinking by doctors, who may think that a certain drug will help patients and don’t want to take them off it.

Mistakes and distortions in reporting symptoms can be compounded in studies, where one researcher collects the information, another retrieves it from the chart and enters it into the study record, and still others evaluate it. The results can be like playing broken telephone.

He recommends that patient symptoms should be rated separately by patients and their physicians, particularly before and after new medications are approved and brought to market.

A panel of experts set up to probe the effectiveness of opioid treatment agreements has decided not to support the universal utilization of these arrangements, also known as pain agreements or pain contracts.

Pain agreements outline the risks and benefits of opioid therapy, explain what is expected of the patient, educate the patient about how to store the drugs and help the patient distinguish between acceptable and unacceptable drug-taking. Physicians who provide pain management to patients with chronic pain may require such agreements to avoid liability issues if patients misuse their medications.

However, critics say the agreements can result in a more adversarial physician-patient relationship (because the physician can “fire” the patient if he or she doesn’t adhere to the terms of the “contract”).

The real problem, many critics maintain, is the lack of pain specialists. As a result, primary care physicians, many of whom lack appropriate training in pain management, may take the path of least resistance and overprescribe pain medications at the request of patients.

The panel of physicians and pain-policy experts, which was convened by the Center for Practical Bioethics, a Kansas City, Mo.-based think-tank, concluded it could not support the universal utilization of pain contracts at this time due to “the lack of data about the benefit of pain agreements/contracts, concerns about increasing disparities and further stigmatization of pain patients, and other possible unintended consequences, coupled with the importance of preserving the integrity of medicine from inappropriate outside influence.”

Research shows that a surgeon who has been working for 24 hours is impaired as much as a drunk person in thinking and motor function. So should patients have a right to know if their doctor has been up all night?

Yes, say a group of sleep researchers, who argued for full disclosure of sleep deprivation in a recent article in the prestigious New England Journal of Medicine.

No, responded the American College of Surgeons, whose leaders say it should be up to the individual surgeon to decide if he or she is too tired to operate -- or if the surgeon needs to tell the patient before heading to the OR.

The debate shows that surgeons and hospital administrators are just beginning to consider some basic issues of fatigue and patient safety that in other contexts -- piloting airliners and driving large trucks on interstate highways -- have long been settled.

Surgeons understandably don't want to be subject to the welter of bureaucratic rules that truck drivers and pilots deal with. And patients might not like it either if a surgeon was required to announce that he would be starting their surgery but another doctor would come into finish it because the time would stretch beyond the first doctor's hour limit.

But some sensible limits could easily be put in place. For one, the opportunity for a surgeon to work inhuman hours is created by hospitals who let a surgeon sign up for overnight call, which often results in working all night in the OR, and let the same surgeon schedule elective non-urgent cases for the next day.

Why would a surgeon do this in the first place? The lure of money, as a number of commenters on the New England Journal of Medicine website candidly admitted. Which raises a problem with the American College of Surgeons' idea that surgeons should be left to their good judgment on when and when not to operate. Anyone who schedules back-to-back call nights with elective cases is not showing good judgment in the first place.

Another issue for patient safety is the surgeon who is well rested but inexperienced, for not having gone through sleepless nights filled with surgical cases. Residency training programs are now starting to limit young surgeons to 16-hour days, which many surgeons say is going to result in a generation of rested but green doctors.

The right of informed consent gives at least one answer to the conundrum. Every patient has a right to know what any reasonable patient would want to know going into a surgery. And since we would all pause before submitting to the knife with a surgeon smelling of alcohol, the same right should apply to the less obvious danger of the sleep-deprived surgeon. If a doctor wouldn't want a family member to undergo surgery with that glassy-eyed doctor, then the same right should apply to all patients.

This means patients should be told, and should be given the option of rescheduling or bringing in a fresh replacement to operate. This will be inconvenient for hospital schedulers and may cause some surgeons to lose income. But patients will ultimately be safer for it.

And if hospitals want to minimize patients getting upset for having their plans upended at the last minute, all they have to do is adjust their call schedules to make these up-all-night dilemmas a rare event.

Doctors and nurses bring different values, different training, and different snapshots of patients to the process of care, so it's no wonder they can disagree. Often the disagreements are not about technical issues but about basic human values where there is no clear right and wrong.

Theresa Brown, R.N., has an excellent column in the New York Times about how she agonized when a terminal cancer patient cried out in protest against the painful chemotherapy treatments he was getting. The doctor pushed the patient to carry on the treatment, and so the patient agreed, only to die shortly later with extra pain from bleeding in his bladder that the aggressive treatment had caused.

When she was criticized by another physician for speaking out against what she saw as unnecessary and unwise care, here is how she responded:

So is the doctor-patient relationship really more sacrosanct than the nurse-patient relationship? I don’t think so. Physicians have the ultimate responsibility for treatment decisions, but because nurses spend so much more time with hospital patients than doctors do, we have a unique view of how the patient is really doing. And at times, patients present very different faces to nurses and to doctors — complaining to a nurse in a way they never would to a doctor.

And while my physician colleague said that nurses only see a snapshot, that picture is often one the doctor does not see.

Later, I had another chance to talk to the doctor who raised this issue in the first place. I told him that I was planning to write about our discussion of the role of doctors and nurses. “Yes,’’ he said. “We never got to finish our conversation.”

So we finished it. He shared difficulties he’d had with nurses criticizing treatment decisions when they had only known the patient for a few hours. I nodded. Then I said that physicians can have blinders on, too, and he nodded as well.

In the end he said, “The point is, it needs to be a conversation.” And we both agreed on that.

But when in doubt, I will err on the side of aggressive advocacy for my patients. Nurses have a professional obligation to make sure that patients receive the best care possible and to insure that all care given in hospitals is safe. For better or for worse, patients who come into our hospital are the responsibility of the nurses, even if the patient has been admitted by a doctor of her own choosing. A good nurse will share his or her opinions with the medical staff — sometimes loudly — because that’s part of our job, even if we ruffle a few feathers in the process.

I agree that there has to be a conversation. But I think the central actor in the conversation is the patient, or if the patient is incompetent, then the family. We lawyers call this "informed consent." But it's really about the fundamental human right to determine what is done to our own bodies.

A new patient safety organization has launched a range of online tools and other resources to reduce abuse of opioids by identifying the risks associated with their use. The materials from the CARES Alliance (Collaborating & Acting Responsibly to Ensure Safety) include several “safe-use” programs, tools and educational materials for patients, caregivers and healthcare providers.

They were developed using Failure Mode and Effect Analysis (FMEA), a scientific methodology that identifies where problems occur in the use of pain medications and the underlying causes of those problems. The FMEA research identified 79 areas where problems occur in the use of opioidsand 290 potential causes of those failures.

Tools now available include clinical materials and risk assessments for physicians, safe-use guides for patients and general education for all groups. The organization also plans to develop additional tools based on the research.

Jeffrey Gudin, MD, a pain management and addition specialist at the Englewood Hospital and Medical Center in Englewood, N.J., says that healthcare professionals need to do a better job of assessing our patients' pain medication needs and of communicating the risks of the medications they prescribe.

"Through the resources of the C.A.R.E.S. Alliance, patients, caregivers and health professionals will have access to information, tools and resources to help them better understand these risks and better ensure that the medications are used properly by only those for whom they are prescribed," he says.

The alliance, which is sponsored by Covidien, the largest producer of prescription pain medications in the U.S., also will work to ensure that patients suffering from chronic pain have access to necessary medications.

Doctors repeatedly blame patients for the high rate of Cesarean sections in this country. As one claimed in today's New York Times letters column, parents demand "nothing short of a perfect outcome" from childbirth and sue when they don't get it.

The reality is quite different.

Here's what I wrote in a letter published in the same New York Times issue:

A fundamental patient safety issue is at the heart of our high C-section rate. The reason that hospitals must have staff “immediately available” for an emergency C-section is that when a mother’s uterus ruptures, the baby’s lifeline is cut off and brain damage begins in around 17 to 18 minutes, according to the best studies.

Rupture occurs in about 1 percent of vaginal birth after Caesarean (VBAC) attempts. That’s a high enough risk — with lifelong consequences to the child and his or her family — that only the reckless or the ill informed would tempt fate by trying delivery in a facility without an obstetrician immediately available to do an emergency C-section.

According to your article, hospitals complain of the risk of being sued for a bad outcome if they follow the old guideline of having the surgical team “readily available,” which allows calling in a team from outside the hospital, as opposed to “immediately available.”

We should not let semantics obscure safety. Instead of blaming lawsuits for the high C-section rate, the focus should be on hospitals that don’t want to invest the resources necessary to make VBAC safe for mothers and families.

My law firm's website has more about VBAC and other types of birth injuries here and here.

These are people who are obsessed about a "flaw" in some aspect of their bodily appearance, and who sometimes subject themselves to repeated rounds of cosmetic surgery to "cure" this problem. And of course the surgery never works because the problem is much deeper than the skin. A malpractice lawsuit is not the answer for these patients, as I explained in a comment on the New York Times' "Well" blog:

As a malpractice attorney who represents patients, I have been consulted several times by potential clients whom I later realized had body dysmorphic disorder. When they called for the appointment, the story on the telephone was that they had been grotesquely disfigured by a cosmetic surgeon, often with repeat surgery. Then when I met them, I would not be able to see anything wrong with their appearance, even when they pointed it out to me.

One man in his mid-20s had had his nose operated on three times by the same surgeon. All I could see was that one nostril was slightly larger than the other. He was talking about needing to have yet another surgery. I politely urged him to see a psychiatrist first, and told him I could not represent him in any legal action against the surgeon.

My personal belief is that an ethical cosmetic surgeon would decline to operate on anyone with obvious signs of body dysmorphic disorder (if for no other reason than that this will be a hard-to-please patient), but a willing patient with the means to pay for the surgery can be persuasive for some surgeons, it seems. (Witness Michael Jackson.)

The legal system does not have good answers for these patients. A lawsuit would only perpetuate the patient's idea that their appearance can be "fixed" and that it's the doctor's fault for not doing so. Still, my heart goes out to people with this disorder especially when they subject themselves to a fruitless round of surgeries. They definitely need counseling.

A new website has tools for learning how to speak up effectively when you've had a bad health care experience. That can be anything from being on the wrong end of someone's rudeness to being the victim of a serious malpractice event. The website is called The Assertive Patient. Click here for the link. It comes out of Massachusetts but has good resources for patients everywhere.

The website has a good diagram here that shows the steps involved in getting resolution to a bad experience, especially if it's in a hospital. You start with talking with the providers involved and if they are non-responsive, the hospital will have some sort of patient advocate or ombudsman or quality assurance officer or "risk manager" (many different terms cover the same thing). If this doesn't work, formal complaints to regulatory bodies are the next step, or talking to a lawyer.

The final chapter in my book, The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst, also gives a step-by-step approach to getting to the bottom of poor quality care. And you can get the same information at my law firm's website, by filling out the form to download our free Injury Fact Kit.

Almost nothing is worse in medicine than a cold-hearted delivery of bad news that sucks all the hope out of a patient's lungs. And almost nothing is better than an honest dialogue between doctor and patient that explores the hopes and fears of a patient faced with a very serious condition, in a way that allows for hope in some form to continue to exist. Because we know that when all hope ends, life does too.

His idea is that all of us have a range of hopes that are necessary to carry on with daily life; some are fanciful and others are very concrete and specific.

Doctors need to nurture hope while helping patients redefine what it is they hope for. Even hoping for a miracle in the face of an incurable disease is not necessarily something that doctors should scoff at. As he writes:

Judging such a hope as either realistic or false misses the point; rather, we should judge ourselves as clinicians by the degree to which we can help nurture our patients' collection of diverse hopes.

This is not to say doctors should encourage unrealistic Pollyanna thinking by patients.

Dr. Feudtner hopes to develop better tools to help patients and families in the emotional end of coping with disease. He concludes: "as clinicians, we need to more carefully work through what separates the appropriate management of hopes from their inappropriate manipulation, because whether we want the responsibility or not, we constantly interact with our patients' hopes."

Did you know that rupture of an Achilles tendon can be fatal? This common injury has one potentially fatal but preventable complication: a blood clot can develop in the calf while the leg is immobilized for healing of the injury, and if the clot gets big enough, it can travel to the heart and cause what is called a pulmonary embolism.

The Achilles tendon is the ligament that connects the calf muscles to the heel bone. When it ruptures, the patient must have the calf immobilized for several weeks. That can cause blood clots in as many as three in ten patients, because calf muscles when they flex act as a pump to help bring blood back toward the heart. Immobilized calf muscles allow the blood to pool in the deep veins of the leg and potentially clot.

Samuel Burton, a retired Coast Guard captain, died of such a clot, and a distinguished federal judge recently decided the death should not have happened. Judge Royce Lamberth, chief judge of the U.S. District Court for the District of Columbia, ruled that orthopedic surgeons at Walter Reed Army Medical Center had committed malpractice by failing to warn Capt. Burton when they were treating his Achilles tendon rupture about the risks of this blood clot and what he should do if he developed any of the symptoms of a clot.

When Capt. Burton died, his widow was shocked to learn from the medical examiner who performed the autopsy that two episodes of chest pain and shortness of breath, which Captain Burton had experienced in the weeks before his death, were signs of a potential pulmonary embolism. None of the doctors at Walter Reed had ever warned Captain Burton or his wife of this possible deadly complication and what to watch out for. She sued the government for medical malpractice under the Federal Tort Claims Act. After a trial, Judge Lamberth issued a verdict in favor of the widow, and he ordered the government to pay her $2,080,000. Judge Lamberth concluded that if the doctors had properly educated the patient and his wife, they were responsible people who would have appreciated the need to get to a hospital for treatment before it was too late. Both Captain Burton and his wife had assumed that his two episodes of pain and windedness were from deconditioning because he had resumed some physical activities after being off his feet for weeks.

The judge rejected Walter Reed's defense that since statistics showed that only about one in one hundred Achilles rupture patients died of pulmonary embolism, they didn't need to be warned about the risk.

Two new books take up patient safety and quality of care issues from opposite perspectives, one a physician's, the other a patient's, and both have compelling lessons.

Lisa Sanders, MD is the New York Times Magazine "Diagnosis" columnist. Her book, "Every Patient Tells a Story -- Medical Mysteries and the Art of Diagnosis," starts with puzzles of sick patients and unknown diagnoses. We all love a good mystery, but this book is much more than a compelling mystery yarn. Through deftly told true stories, Lisa Sanders shows how correct medical diagnosis requires a combination of skills and right attitudes. As the book's title implies, careful listening to the patient comes first. A good physical exam is critical, and the worrisome part of the book is how this old-fashioned art is increasingly neglected in medical schools. Luck has a role too -- or maybe it's humility -- as the author gives several cases where happenstance seems to have helped find the correct diagnosis from a medical bystander, but that requires the ability to admit you don't have all the answers and to reach out for help. But perhaps most important: the empathy to persist toward the answer and the quiet time to contemplate the entire patient. This book will help young physicians do better and will help patients find the right doctors who will care about them.

Sorrel King is a Baltimore mother who lost her infant daughter in a medical catastrophe at Johns Hopkins Hospital. Her new book is "Josie's Story: A Mother's Inspiring Crusade to Make Medical Care Safe." Sorrel King has already saved many lives with her tireless work to urge hospitals to listen carefully to what parents say about their sick children. It takes a special person to turn tragedy into something positive. I featured Sorrel and several other brave survivors of medical errors in my book: The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst. It's wonderful to see her now tell the full story of her daughter Josie and her inspiring crusade. I hope everyone can read this book and absorb its lessons.

Every hospital patient needs someone with them at all times to help prevent medical errors and keep them safe. That's a mantra I have advocated for years, and another example of why it's good advice comes with a riveting story in the Washington Post by health writer Sandra Boodman.

Ms. Boodman's article tells how a Washington area woman's advocacy in the emergency room and hospital helped lead to a correct diagnosis of baffling symptoms, and likely saved her sick daughter from harm. The article interviews Patricia Dawn about her 4-year-old daughter Brooke's illness, that was eventually discovered to be Kawasaki disease, an unusual heart condition.

Brooke got the right treatment in time, but only because of her mother's persistence. Mrs. Dawn refused the recommendation of the emergency room doctors to take her daughter home at 2 a.m. when she wasn't feeling any better but they had run out of things to do. At her insistence, her daughter was hospitalized, and an infectious disease specialist eventually figured out that the red lips, red eyes, fever longer than five days, and swollen lymph node in the neck all were signs of Kawasaki, which affects about 2,000 American children a year.

It was also at the family's suggestion that the infectious disease doctor was brought in who made the correct diagnosis.

The story underlines the importance of having a good advocate present at all times with a patient in the hospital. Even a lay advocate can see when symptoms aren't improving and can insist on action.

I discuss this subject in depth in Chapter 12 of my book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst."

I took a deposition a few days ago that underlined for me why we need to have public report cards on primary care doctors so that patients can separate the mediocre practitioners from the really good ones. I wrote an article explaining the idea. Read my entire piece on Huffington Post, which I called "One Good Reason to Get Mad About Health Care."

That question was asked in a New York Times column by Dr. Pauline Chen, and her column prompted a number of thoughtful comments by both doctors and patients. Clear communication is a critical element to good diagnosis, and that puts burdens on both doctors and patients.

Some of the comments on the column which I found most helpful:

I think the most important thing to avoid missed diagnosis is to improve the communication between doctors and their patients. It is especially important to encourage patients to be pro-active and be involved in their care. For example, I give my patients copies of all their test results when they come to visit and encourage them to read them and ask questions if they do not understand specific terms (and they frequently do). I tell all my patients not to assume anything; “If you call to find about test results and no one return your call, do not assume that they are ok. Please call again and make sure that you speak to someone.”

As a cancer specialist in a referring center, many of my patients ask whether they had their cancer for a long time, and whether an early diagnosis was missed. I perfectly understand the concerns. However, it is my experience that patients who are involved in their own health care and are well informed, usually have less chance of having missed diagnosis than those who blindly trust the system and passively participate. Blaming never resolves any problems. It is more tragic if one (patients or doctors) did not learn from their mistakes.
— Anas Younes, M.D.

And this one from a doctor in training:

I appreciate the 2nd half of the article, particularly highlighting the social characteristics of the patients most likely to not follow up with something they should have. However, in contrast to the comments above, I believe that it is always the physician’s responsibility to make sure that he/she and the patient are on the same page. I say this as a physician-in-training, and as a patient as well.

Patients are sick, scared, and, for the most part, worked pretty hard to get through the clinic door. it is the physician’s responsibility to understand the patient’s perspective, and act accordingly. We need to understand their disease as they understand it, even if we don’t agree with it.

All too often, we ignore or fail to appreciate the power differential latent within the patient-physician relationship. If a physician authoritatively tells a patient to schedule a mammogram or colonoscopy, it takes a strong patient to go against that edict. However, when the patient doesn’t follow up in the way we want him/her, it is our fault for failing to understand their position. Within each encounter, we need to strive for a truly shared decision-making model. If we solicit the patient’s thoughts, feelings and concerns about the plan we have for them, they will be on board with the plan, because it’s their plan too.

Granted, this is a tall order, However, it is our responsiblity as physicians to ensure that the patients we see are on board with us. Now certainly there are some patients and some reasons why a person may not follow-up when they say they will, but, from my experiences, a patient chooses not to follow-up when he/she hasn’t been part of the decision-making process.
— Alex

Patients who want to communicate effectively with their physicians and be joint participants in the care plan should take a look at my system for going to the doctor's office, in Chapter 3 of my book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst." The system is "Make a List, Leave a List, Take a List," and it involves putting in writing all our worrisome symptoms before the visit, leaving that list with the doctor, and making sure to take home a list of the action plan. This helps focus both you and the doctor on what is important and helps cut way back on the potential for miscommunication which is the source of so much misdiagnosis and missed opportunities for cure.

Whether or not a patient should get an expensive imaging scan or some other elaborate and expensive test is not always clearcut. But what should be clearcut is that doctors should not have a thumb on the scale when they're balancing harms versus benefits. The balancing ought to be focused entirely on what's in the patient's best interest. The news story about what happened when a group of urologists in Iowa ordered a new CT scanner for their office sheds light on this conflict of interest issue.

According to the article by Shankar Vedantam in the Washington Post, the doctors at Urological Associates in Iowa were ordering fewer than one dozen CT scans per month for their insured patients in the months before their office bought its own CT scanning machine. That number jumped to 55 scans per month soon after the doctors got their own machine and started getting direct insurance payments for its use.

Defenders of the doctor-owned machines say it's more convenient for patients not to have to go to some other building for their scan. That's no doubt true -- if the scan is really needed in the first place. The problem is that self-interest colors the doctor's calculation, whether subtly or blatantly.

You might say "so what," but no test is without its downside, and excessive radiation from unnecessary CT scans can ultimately cause cancer in some patients -- as many as one in one hundred cancers are traced to radiation exposure. Not to mention bankrupting our health care system in the meantime.

Congress is considering outlawing the practice of what is called "self-referral," referring the patient to a test on a machine that the doctor owns. At the least, Congress should make it mandatory that doctors disclose any self-interest they have in testing, so that patients can take it into account in deciding whether they want the test.

I discuss doctor conflicts of interest in Chapter 9 of my new book, "The Life You Save." Chapter 9 is called "The Second Opinion: Always Your First Choice." It explains why you the patient need to understand if your doctor may have some ulterior influence on his or her thinking, and how it's always a good idea to get a second opinion before undergoing any major procedure.

Everyone who has had any medical or surgical procedure has signed a consent form -- usually lots of intimidating words, hard to read, and seldom explained well.

There is a better way, and it involves recognizing that true "consent" is not about signing a form, but it's about old-fashioned conversation -- a real dialogue between the doctor and the patient that gives the patient a chance to really understand what is about to happen to their body, and gives both doctor and patient a chance to start developing a bond.

Dr. Pauline Chen wrote a helpful column on the subject in the New York Times.

Quoting another doctor who has studied the consent process, Dr. Chen writes that "'Informed consent is about forging a partnership with the patient.'” And she says:

That partnership is essential and requires what Dr. Martin F. McKneally, a professor emeritus of surgery and bioethics at the University of Toronto in Canada describes as a “leap to trust.” Patients must feel they have a certain degree of trust in their doctors before they can give consent, and that trust is built, in part, from the kind of difficult conversations that can arise.

My comment posted on the Times' "Well" blog:

This article is another reminder of what I tell people as a patient advocate, and the approach I put into my book “The Life You Save”: “Informed trust is good; blind trust is bad. Ask questions until you’re really comfortable knowing what’s going to happen. It’s your body.” With conscientious doctors like Dr. Chen, this can really happen. (And contrary to what “Jack” says, the fact that it may be routine for the doctor doesn’t make it routine for the patient and doesn’t make it acceptable to rush through the consent dialogue.) The payoff for physicians is a much more accepting attitude by patients of the bad things that can occasionally happen despite good care. The payoff for patients is better care.

Now some doctors burned by reviews are striking back. A growing number of them are asking new patients to sign up-front agreements promising not to post anything about them on-line, or in any other media, "without prior written consent," according to an article by Sandra Boodman in the Washington Post.

The ethics and legality of such "gag orders" are questionable. But to my lights, they serve a useful purpose: Any doctor who would be so sensitive to criticism that he or she would ask me to sign such an agreement is not a doctor whom I would want to trust with my life. Period.

As for the web sites themselves, they have varying amounts of useful information. RateMDs, for example, one of the biggest, covers some 200,000 physicians across the country, but most of the doctors have only one or two reviews. It's not fair to make a judgment about a doctor based on such a limited survey. I would want to see at least ten or more reviews of a doctor, and see how consistent the ratings were among the responders, before thinking this was useful information.

The popularity of these web sites is a sign of how hungry patients are for reliable information in making the important choice of a doctor. And the fact is that there is very little reliable objective information on which patients can make informed decisions. I devoted a chapter of my book, "The Life You Save," to finding a top primary care doctor, and another to finding a top surgeon. I believe there is no easy shortcut for the hard work of:

* Checking credentials to make sure the doctor is board-certified by one of the officially recognized boards (Michael Jackson's live-in doctor, for example, was not certified in anything).

* Experiencing the doctor's care, at least once, to gauge his or her listening skills and empathy. These are important not just for making patients feel good, but for making accurate diagnoses and giving patients confidence in the care plan the doctor develops.

* Making sure the doctor has adequate backup for when the doctor is out of town.

* Learning that the doctor is on staff at a good nearby hospital.

A detailed discussion of how to find top doctors and surgeons can be found in Chapter 5, Chapter 6 and Chapter 10 of "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst."

A column in the New York Times by Pauline Chen, M.D., relates how a colleague of hers named "Ed" crashed and burned on his way to becoming a general surgeon, seemingly because of his difficulty in learning from his own mistakes.

The blog comments by both doctors and patients are revealing. Many make the point that physicians can deal with the stresses of medical practice, and become better at their craft, by being less obsessed with perfection and more open to working with others in a supportive, teamwork environment. I particularly enjoyed a comment (No. 121) from "Susan," that linked the issue to the recent story by Jane Gross in the Times about the Sisters of St. Joseph near Rochester, New York, who have figured out that putting the patient's wishes at the heart of the enterprise makes for more humane and better health care.

Here is the comment I posted on the Times' site:

Susan’s comment is right on target. A team ethic, and the recognition that “we’re all in this together” — patients included, goes a long way toward making the inevitable small mistakes a teaching moment rather than one step toward a disaster for the patient. And when disaster does happen, honesty is always the best policy. I represent patients in lawsuits against hospitals and doctors, and can say emphatically that the medical industry could greatly reduce its exposure to legal actions if hospitals and doctors would just respond with maturity and complete candor when mistakes happen.

One more change in philosophy could help reduce the toll of medical error. If patients were more involved at every step of the process, we could help nip a lot of disasters in the bud and get better care for ourselves and loved ones. There is much that we can do, starting with reading our own medical records. I just wrote a book about this called “The Life You Save: Nine Steps to Finding the Best Medical Care — and Avoiding the Worst.” Chapter One can be read at http://www.lifeyousave.com.

Elderly patients are different. They are more sensitive to some drugs, less to others, have unusual presentations of common conditions, and otherwise are not that easy to diagnose and treat when the doctor is used to dealing with younger patients.

Bemoaning the lack of required geriatric training in medical schools, geriatrician Dr. Rosanne Leipzig gave this example in a recent op-ed piece she wrote in the New York Times:

Often even experienced doctors are unaware that 80-year-olds are not the same as 50-year-olds. Pneumonia in a 50-year-old causes fever, cough and difficulty breathing; an 80-year-old with the same illness may have none of these symptoms, but just seem “not herself” — confused and unsteady, unable to get out of bed.

She may end up in a hospital, where a doctor prescribes a dose of antibiotic that would be right for a woman in her 50s, but is twice as much as an 80-year-old patient should get, and so she develops kidney failure, and grows weaker and more confused. In her confusion, she pulls the tube from her arm and the catheter from her bladder.

Instead of re-evaluating whether the tubes are needed, her doctor then asks the nurses to tie her arms to the bed so she won’t hurt herself. This only increases her agitation and keeps her bed-bound, causing her to lose muscle and bone mass. Eventually, she recovers from the pneumonia and her mind is clearer, so she’s considered ready for discharge — but she is no longer the woman she was before her illness. She’s more frail, and needs help with walking, bathing and daily chores.

This shouldn’t happen.

Dr. Leipzig co-authored an article for medical educators listing 26 areas of competency in treating elderly patients that medical students should have to demonstrate before getting out of school; the list is nicknamed the "Don't Kill Granny" list.

For the rest of us, the takeaway lesson is that when we're advocating for an elderly relative with a new doctor, we need to find out if the doctor has deep experience in treating elderly folks, and if not, ask for a second opinion from a doctor who does. This can make a huge difference in quality of medical care -- and quality of health for our relatives' twilight years.

More tips on being a patient advocate can be found in Patrick Malone's new book, "The Life You Save."

Having an ally to help you negotiate the health care maze can be absolutely critical to obtaining the best medical care, especially if you are sick enough that you're not thinking as clearly as usual. A patient advocate does not need any special training in medicine or nursing -- just an inquisitive mind and persistence in asking questions and getting answers.

As this blog has previously reported, patients in some parts of the country now can find professional patient advocates to help them. People who have tried it say these advocates are lifesavers who are worth every penny of their fee.

A group that does this for free with volunteers is called Bedside Advocates in the Boston area, founded by retired physician Jonathan Fine. The group was featured in a recent story by NPR health reporter Richard Knox. The problem is that volunteers working part-time can only help a limited number of patients, and the need is vast.

Nurse Dianne Savastano has set up a professional patient advocacy service, also in the Boston area. The NPR story quotes one of her clients, Barbara Porter, who hired Ms. Savastano to help manage the complex care needs of her elderly father, for which she pays Ms. Savastano $15,000 a year. Says Ms. Porter: "I tell him, 'Dad, you got resurrected.' He literally did get resurrected. He would either be dead or in a nursing home right now if it wasn't for Dianne."

Patrick Malone's new book, "The Life You Save," gives a list of pointers for how family members can become effective advocates for their elderly relatives who cannot manage their own care. If you live in an area with professional patient advocates, that should be an option you should consider. None of us can go it alone in this complex health care system.

There's a new/old take on the importance of primary care doctors to obtaining the best quality medical care. It's called the medical home, and it doesn't mean house calls, but it does mean that the patient has a medical "home" -- a team of providers, led by a primary care doctor, who coordinate the patient's care and know everything that is going on with specialists, testing and followup.

This is new because it's being rejuvenated as a way to cut costs and get higher quality care; it's old because the term was coined by the American Academy of Pediatrics in 1967. Jane Brody reports on this in her personal health column in the New York Times.

The medical home concept is supported by all the medical societies who represent primary care doctors. Unfortunately, over the last few decades, insurance reimbursements have been slanted toward performance of tests and not the painstaking work of listening to the patient, thinking through the patient's problem, and recommending a course of care.

Getting a top primary care doctor is one of the "Necessary Nine" steps for quality care outlined in my book: "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst."

Evidence continues to pile up for why patients need to read their own medical records. A new study finds it is distressingly common for primary care practices, especially big ones, to fail to inform patients about abnormal test results.

Overall, the study found seven times out of 100, abnormal test results were not conveyed to patients. In two large primary care practices, one in four abnormal test results were never mentioned to the patient.

Bottom line: Patients who don't hear back the results of their testing can never assume that no news is good news. People need to ask for a copy of their test results from either the doctor's office or the lab where the test was done.

Getting and reading your own medical records is Step One in the nine-step system I recommend for getting the best medical care, in my book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst."

Medicine continues to take small but encouraging steps to move out of the 19th century in communications with patients. The latest: an experiment at Boston's Beth Israel Deaconess Hospital to let patients read on a secure website the notes that doctors write about them at the end of each visit.

As reported in the Boston Globe by Liz Kowalczyk, the project will last a year and will include detailed questionnaires to see how doctors and patients react to these "open notes."

Sometimes the notes a doctor writes after seeing a patient are more blunt than the message the patient might hear in person, for example, a discussion in the office about the patient's obesity or use of narcotic pain relievers.

Patrick Malone's new book, "The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst," advises patients to always read their own medical records -- even if the facts they contain may be a little "raw." The upside to reading your own record is to improve your own understanding of what the doctor's advice was, to help correct errors or omissions in what the doctor wrote, and to otherwise make you the patient a more vital participant in your own health care.

A New Yorker article by Dr. Atul Gawande, a surgeon, focused on why McAllen, Texas has higher medical costs than just about anywhere in the country. Dr. Gawande concluded that much of the problem could be traced to the very aggressive, intervention-oriented style of medicine practiced there -- all stemming from the fee-for-service payment system that rewards the doctors who practice intensive, high-cost care. His article achieved new prominence this week when President Obama told White House aides and members of Congress that after reading the article, he decided "This is what we've got to fix."

Aggressive, high-cost medicine has never been proven to make anyone healthier or live longer. Why do the McAllen doctors order so many tests and procedures? Because they make more money from our fee-for-service system. The answer is to reorganize care so that doctor don't have a built-in conflict of interest where they prosper economically the more stuff they order. But that reorganization is easier said than done. Dr. Gawande rightly looks to models like the Mayo Clinic, where doctors are on salary. Read more about this on Dr. Bob Wachter's health care blog.

One interesting sidelight to Dr. Gawande's article is that he nails the old bug-a-boo of the medical industry: so-called "defensive medicine" in which doctors supposedly order lots and lots of tests not out of any perceived medical necessity but out of fear of being sued for malpractice. A group of McAllen surgeons tried this explanation out on Gawande, but he rightly pointed out to them that Texas has some of the strongest tort reform in the country, so he was skeptical.

He didn't mention, but might have, that other states like California, which in the 1970s made it almost impossible to sue for malpractice except for the most egregious cases, have enjoyed no medical cost savings that anyone has been able to count. Health care economists have proven that what explains disparities in medical costs is high numbers of specialists in a community and correspondingly low numbers of primary care doctors.

That Congress is just now discovering the realities of medical economics, which have been published in study after study over the last three decades, is itself pretty scary.

It sounds like every patient's medical fantasy: Easy access to your doctor 24/7, same-day appointments, thorough and unrushed examinations, little to no time in the waiting room. The only downside is expense: To get this kind of personalized care from a primary doctor, you have to pay an annual fee, and forget about insurance covering it. And you will still need insurance to cover hospital stays and specialists.

Is this ultra-personalized health care, which is called "concierge medical practice," worth it? Many patients think so. Even those squeezed by the recession are often finding room in their budgets for the annual fee for a concierge doctor, even as they cut down on restaurant dinners and other non-essentials.

According to a report by Kevin Sack in the New York Times, leaders in the field of concierge care say they see no impact of the recession in the steady growth of their practices. Dropout rates from the practices are holding steady.

It's estimated there are about 5,000 concierge doctors in the United States, a small fraction of the 240,000 internal medicine doctors in the country. One of the largest groups is called MDVIP, which started in Florida and now has 300-plus physicians in its network. Each MDVIP doctor is limited to 600 patients, who have to pay an annual fee of $1,500 to $1,800. The limit on the number of patients lets the doctors see far fewer patients in a typical day.

The advantage for patients is having a medical expert on hand who knows your body intimately and can sometimes detect subtle danger signs before a full-blown crisis develops.

In his new book, The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst, finding a top primary care doctor is one of Patrick Malone's key "steps" to finding the best medical care. If it takes extra money to get that relationship, and you can afford it, signing up with a concierge medical practice can be money well spent.

Nobody wants to go home from the hospital only to be readmitted within a few weeks. But that revolving door is very common in conditions like heart failure, where the patient's heart muscle doesn't pump effectively after it has been weakened by heart attack or other heart disease.

The open secret of the hospital industry is that the financial incentives of Medicare and private insurers are tilted toward keeping that revolving door going. Hospitals that actually invest money in following patients after they leave the hospital to try to keep them healthy find that they lose money on this follow-up care. Reed Abelson of the New York Times wrote a report describing how progressive hospitals that have tried to keep their patients from readmission have lost millions of dollars in the process. Those include the Park Nicollet Health Services in Minnesota and Catholic Healthcare Partners in Cincinnati.

One lesson from this story is that patients don't have to wait for medical payment reform to get better care and avoid the revolving door. If you or someone in your family has heart failure, here are the early warning signs that symptoms may be worsening and a doctor or nurse should be called:

* Weight gain. Patients need to weigh themselves every day. Sudden weight gain often means a buildup of fluids caused by the heart not pumping effectively.

* Shortness of breath. Fluid buildup often is most apparent in the lungs and is signaled by being out of breath.

* Ankle swelling. Another place where fluid buildup can be spotted early.

A phone call to the nurse can result in an adjustment of medication that may ease the problem. If that doesn't work, a visit to the doctor's office might be in order. The goal is to intervene before a crisis develops and you have to be rushed to the hospital in an ambulance.

If your doctor already has a system in place that helps you monitor yourself at home, that means you have a top-quality doctor. If you have a hard time getting such a monitoring system going with your doctor, then it might be time to switch to someone who is more responsive.

Patrick Malone discusses how to find a top primary care doctor in his new book, The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst

An Institute of Medicine report released on April 28, 2009, denounces the adverse effects that the health care system suffers from the free gifts regularly pumped into hospitals, medical schools, and doctors’ offices, writes New York Times’ Gardiner Harris. The report strongly advises doctors to stop accepting the gifts. The report says that accepting gifts would “create conflicts of interest, threaten the integrity of their missions and their reputations, and put public trust in jeopardy.”

When doctors accept gifts from drug companies – which may be money, drug samples, office supplies or food – they change their prescribing habits. This change may or may not be conscious, but the “reciprocity instinct” that prompts people to return a favor is part of human nature that has been recognized by psychologists and anthropologists. And when this happens, the patients are the real victims: their doctors may prescribe new drugs that are yet to be tested for their safety or effectiveness, or drugs that patients can easily replace with diet or lifestyle changes.

Getting a loved one home from the hospital is always a relief for both patient and family, but the weeks immediately after hospital discharge are fraught with peril, as many families don't discover until the patient has to be readmitted for a new problem. This is especially common with Medicare patients: an alarming one in five Medicare patients are back in the hospital within thirty days, and one in three are readmitted within ninety days. Fully half of the non-surgical patients who have to be readmitted in the first month after going home had no followup visit with any doctor during that same month. That means the patients were basically set adrift to fend for themselves. These numbers come from an analysis published in the New England Journal of Medicine, as reported in an editorial in the New York Times.

Leaders in the health care field freely admit that hospital readmissions come about from poor discharge planning and inadequate communication with family members about what they need to do to keep the patient healthy. The president of the American Hospital Association said in a letter to The Times about the editorial: "Most unplanned readmissions can be traced back to our fragmented delivery system, and to the lack of social support programs for many elderly and sick patients."

What is the answer?

Family members who are assigned by hospitals to take care of a loved one at home need to be very clear on what they are supposed to do. Do not let a family member be dumped on your lap without a clear, written list of everything they need, including medications, therapies, and appointments for return visits. Family members need a lifeline they can call on when things don't seem to be going right.

The leaders of our health care system are talking about extending Medicare benefits so that nurse managers can coordinate the transition from hospital to home, or teams of caregivers can conduct house calls on recently discharged patients. These are promising ideas, but what is needed right now is for anyone who has a family member coming home from the hospital to speak up and insist on clear instructions and advice. Being forceful and clear can help the caregivers help you to make sure there is a well thought out plan and that you can realistically carry it out.

Patrick Malone's new book, The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst, has a chapter on how family members can become effective patient advocates when they have someone in the hospital. The chapter includes a list of key checkoff points that you need to understand when a loved one is discharged to your care. You need to have at a minimum:

* A written set of discharge instructions.

* A specific appointment with the doctor in charge for a followup visit.

* A list of bad things to watch out for, and the contact person to relay this information to.

* Written lists of all medications that need to be taken, when and how; plus all therapies that need to be done with similar detailed instructions.

One of the true pioneers of modern medicine is Dr. Thomas Sarzl, who performed the first liver transplant and who developed many of the procedures that have made transplantation a safe lifesaving treatment for thousands of people.

From his many years of experience, Dr. Starzl gave three nuggets of advice to patients, which I am reprinting because I think he is right on target:

"As for the patients," he told Dr. Chen, "I would give this advice — I followed it myself. That is to get a practitioner of general medicine to take care of you, somebody who is not a narrow specialist. And have that person take care of yourself and the people you care for most, your family. The second is to be constantly learning so you can be informed and have some judgment about advice you are given. And then the third item would be to get a second opinion if some really significant thing happens that requires drastic therapy. Those decisions are so important that I think you should get a second opinion if you come to a point where you need the treatment required for cancer or transplantation or catastrophic indications."

One of the less common forms of cancer, oral cancer was diagnosed in about 35,300 Americans last year and caused the death of 7,600 people. Although oral cancer is one of the easiest to detect and diagnose, the five-year survival rate is only 59%, and more than 60% of cases are diagnosed in the late, incurable stages – which may be a result of people not regularly visiting their dentists or not asking to have visual exams, reports Laurie Tarkan of the New York Times.

The most effective way to screen for oral cancer is to carefully look for it. The dentist or dental hygienist should examine the cheeks, the gums, the floor of the mouth, the area behind the teeth, the palate and the tonsil area (pulling the tongue forward), and should feel the lymph nodes of the neck. Such visual exams are found to reduce mortality by 34% in a study done in India. Emerging on the market are alternative tests and devices that may be more sensitive than the traditional visual exams. However, no decisive study has been done to prove that the more expensive tests are necessarily better.

Dentists encourage patients to get a thorough visual exam every year, and they recommend it not only to the high-risk groups (smokers and heavy drinkers) but to every adult, because oral cancer has recently been linked to oral HPV, which is transmitted through oral sex.

An international research team has shown that death and complication rates from surgery can be dramatically improved by using simple checklists to make sure that safety measures are taken before, during and after each operation.

The research project, involving nearly 8,000 patients at eight hospitals around the world, was done as part of the World Health Organization's program called Safe Surgery Saves Lives. The results were published in January 2009 in the New England Journal of Medicine.

When the surgical teams at the hospitals used the checklists, they found that death rates were cut in half and non-fatal complications by one-third.

The nineteen items on the surgical safety checklist include basic items like verifying that the team has the correct patient and the correct surgical site, making sure the pulse oximeter (which measures oxygen in the blood) is working, making sure antibiotics have been given within one hour before the start of the surgery to prevent infection, and confirming that x-rays needed for the case are on display in the operating room. One other item on the checklist is to have all members of the surgical team introduce themselves by name and role; this is intended to give permission to lower-status team members to speak up at a later time if they notice something wrong. Click here for the entire checklist from the WHO (which is part of the United Nations).

The Patrick Malone law firm has prosecuted many lawsuits against hospitals where these basic preventive steps were not done and their absence led to tragedy. Examples include non-functioning pulse oximeters, surgery done on the wrong body part, and failing to prepare for known possible risks like heavy bleeding.

Patrick Malone discusses steps that patients can take to make sure their surgeons follow safe practices in his new book, The Life You Save: Nine Steps to Finding the Best Medical Care -- and Avoiding the Worst, available at Amazon.

When a doctor knows that his patient would receive better care elsewhere, should he inform the patient and send him to another provider? While this question is yet to be settled among bioethicists and physicians themselves, authors of an article published recently in the journal, Public Library of Science Medicine, think doctors have an ethical obligation to tell patients that better care is available to them, according to the New York Times’ Denise Grady.

Research has shown that facilities that perform high volumes of a certain procedure do it better than those that perform the procedure less frequently. The difference is substantial, especially in surgeries of pancreatic and esophageal cancer, although “the experience of the surgeon and the whole medical team [is] important in any major cancer surgery.”

Only a few courts around the country have decided whether doctors have a legal duty to inform patients that another doctor might have more skill and experience performing a planned surgery. One of them is Maryland's highest court, the Court of Appeals, thanks to a client of Patrick Malone named Billy Boone who suffered brain damage after an ear surgeon punched a hole into Mr. Boone's brain.

Mr. Boone's case shows that surgeons' skills make a difference in much more than cancer surgeries. The Maryland Court of Appeals decided that Boone had a legal right to know that his surgeon did not have extensive experience doing the ear surgery that Mr. Boone underwent.

Mr. Boone had an outpatient surgery in January 2000, to remove a benign growth from the mastoid cavity behind his left ear. Dr. Seth Goldberg, an ear nose throat surgeon, performed this surgery, called a mastoidectomy. Seventeen years before, Mr. Boone underwent the same procedure, in which another surgeon drilled out the same mastoid to remove a cheesy growth of skin debris called a cholesteatoma. Unknown to Boone, the surgeon had become lost at one point during the procedure and drilled a hole in the skull just above the mastoid, near the bottom of the brain's temporal lobe. But nothing happened to his brain, which was protected by the tough fibrous shell below the skull called the dura. Years later, when Dr. Goldberg prepared for the new surgery, he took some CT scan pictures of the bone anatomy and saw the pencil-sized hole in the side of the skull.

Dr. Goldberg's surgery seemed uneventful, but after Boone went home, he developed a short-term memory problem that ruined his ability to do carpentry; worse, he developed a problem controlling his temper that unleashed itself at stressful moments on whoever happened to be nearby. Later, his neurologist explained to the jury that Boone's outbursts could be traced to injury in the limbic system that modulates emotional response.

A CT scan showed that a hole had been poked from the pre-existing skull defect into Boone's brain. A small pocket of air could be seen in the temporal lobe, surrounded by a pool of blood. But it wasn't just air in the brain – it was something slightly denser than air, likely surgical gelfoam which could have made its way there only if Dr. Goldberg had pushed it in to try to stop bleeding after he punched the first hole.

The key moment for Mr. Boone came not in the surgery but a month before, when he sat down with Dr. Goldberg to go over the planned operation. Goldberg never volunteered the key information: that with the hole in the skull from the prior surgery, his surgery would be that much more difficult, could even result in an injury to the brain, and Mr. Boone might benefit from consulting with someone who regularly did "revision mastoidectomies," the technical term for this second go-round. A general ENT doctor who advertised his specialty in facial cosmetic work like nose jobs – he named his professional corporation the "Aesthetic Facial Surgery Center of Rockville" – Goldberg only had done occasional revision mastoid surgeries. His operation on Boone proved he wasn't up to the job. On the witness stand, Goldberg admitted he hadn't discussed with Boone the hole in the skull, the chance of brain damage, or the availability of sub-specialists called neurotologists. For Billy Boone, the jury's vote in his favor, and the Court of Appeals' affirmance of the award, gave him some vindication. For other patients, his win makes it easier to demand the information you need to make a sensible selection among surgeons. Of course, if you asked Billy Boone, he would trade in legal vindication for a healthy brain any day. It's too late for him, but not for the rest of us.

The convenience of the Internet allows consumers to evaluate and compare their experiences with anything from piercings and dog walking to a visit to their doctor’s office. Although the website ratings may be helpful in an initial survey of local doctors, patients should not look to them as their sole source of information when determining to whom they’ll entrust their health care, says Dr. Pauline W. Chen in a New York Times article.

Dr. Chen noted that on a particular consumer reviews website, doctors are evaluated in five categories (price, quality, responsiveness, punctuality and professionalism) and given a grade according to user input. She found that doctors who are “warm, concerned and focused” receive A’s or B’s, whereas the less friendly may be given failing grades.

While these ratings correctly reflect the fact that patients feel more at ease with compassionate and caring doctors, one would be hard-pressed to find in these report cards an evaluation of the doctors’ medical skills. Such is not the case in consumers’ evaluation of other trades, such as roofing or body piercing, where they are quick to comment on the quality of services or craftsmanship.

Dr. Chen suggests that, instead of simply relying on some generic grades that could very well be a mere personality assessment, patients should find out about their doctor’s “training, board certification, experience, membership in a respected professional society, safety records and hospital affiliations.”

The American College of Surgeons found this year that more than a third of patients did not review the credentials of the surgeons who operated on them, but on average they spend 10 hours researching a job change or 8 hours on a new car.

Patients should not blindly trust their doctors. “[M]edicine and surgery are team sports,” said Dr. Thomas Russell, executive director of the American College of Surgeons. Patients make the ultimate decisions about who will give them health care and, in that capacity, they have an important role in the team. They should be diligent in educating themselves.

Dr. Russell’s book, “I Need an Operation…Now What? A Patient’s Guide to a Safe and Successful Outcome,” encourages patients to equip themselves with knowledge of their illnesses and doctors and be more effectively involved in their own treatment plan.

Patrick Malone has written a book on how consumers can be pro-active in their medical care. The book is: The Life You Save: Nine Steps to Finding the Best Medical Care and Avoiding the Worst. Read about the book here. It can be pre-ordered here on Amazon. Several chapters detail the steps needed to find both top primary care doctors as well as specialists.

Nearly every week, we hear more evidence that American children are over-medicated, especially with drugs that affect mood and behavior. Most recently, a panel of experts has denounced the overuse of Risperdal, a powerful antipsychotic drug, for attention deficit disorder. The drug has too many side effects, including potential development of permanent muscle twitching, to justify its use in mild conditions like ADD for which other options exist, according to the expert panel convened by the Food & Drug Administration to advise it on labeling changes.

What is behind the explosion in use of antipsychotic drugs in children (besides Risperdal, they include Zyprexa, Seroquel, Abilify and Geodon) is a drumbeat of support from leaders in child psychiatry. But that leadership is tainted by their ties to the drug industry -- ties that frequently don't get mentioned in public when these same doctors are lecturing their colleagues and advising worried parents. One leader, Dr. Joseph Biederman, a child psychiatrist at Harvard, was revealed by a Congressional investigation to have accepted $1.4 million from manufacturers of antipsychotic drugs that he did not disclose to his university. Another psychiatrist leader, Dr. Charles B. Nemeroff of Emory, had to step down as chair of psychiatry after it was revealed that much of his consulting pay from drug makers, which totaled over $2.8 million in seven years, had been hidden from his university.

Now another influential psychiatrist has been exposed for his secret ties to the drug industry. He is Dr. Frederick Goodwin, former chief of the National Institute of Mental Health, who hosted a popular show on National Public Radio, "The Infinite Mind." Senator Charles Grassley of Iowa released data to the New York Times showing that Dr. Goodwin received $1.3 million from drug manufacturers from 2000 to 2007 for giving marketing lectures to other doctors. The money was never mentioned on his radio show, and NPR now says the show has been canceled and all reruns will stop soon.

According to the Times' Gardiner Harris, on one day in 2005, Dr. Goodwin received $2,500 from GlaxoSmithKline to give a talk about its mood stabilizer drug Lamictal at a Ritz Carlton resort in Florida. On his radio show broadcast the same day, Dr. Goodwin said that children with bipolar disorder who did not get treatment could suffer brain damage (a controversial prognosis) but he reassured his listeners that mood stabilizer drugs were a safe and effective way to treat the problem.

Senator Grassley has sponsored legislation to require drug makers to post publicly all the payments they make to doctor consultants. That would help the public to know whether the recommendations they see from doctors for medicating their children are truly unbiased or should be taken with a grain of salt.

Millions of people with normal cholesterol levels in their blood could be started on cholesterol-lowering statin drugs based on a new research study, but if patients understood the numbers behind the study, they might not move so fast to put statins in their medicine cabinet. Every patient can benefit from a closer understanding of how statistics work in medicine to push people toward treatments that they may or may not really benefit from.

The latest study involves people who were put on cholesterol-lowering statins because they had a high result on a blood test called C-Reactive Protein, even though the same people did not have high cholesterol.

* The researchers reported an impressive sounding 50 percent reduction in heart attacks in the group treated with statins, as compared to patients in the same study who got a sugar pill (placebo) instead.

* But the real numbers of actual patients helped by the statins were only around nine in every 1,000 people treated -- less than one percent.

How do those numbers fit together? In the placebo group, 18 of every 1,000 patients suffered a heart attack or some other serious heart event during the study. In the group taking the statin drug, nine of every 1,000 patients had a serious heart event. That's how the researchers could report that the risk had been cut in half -- from eighteen to nine -- although the actual numbers of patients were few. Comparing eighteen to nine is called a relative risk ratio. Comparing 18/1,000 to 9/1,000 is called comparing the absolute risk. The absolute risk number is usually more meaningful.

Another important number for patients to understand in figuring out if a new medicine is for them is called the "number needed to treat." How many patients need to be treated with the new drug for one patient to benefit?

According to a New England Journal of Medicine editorial which analyzed the new study, 120 patients would need to be treated with statins over two years for just one of those patients to benefit.

That number might be enough to persuade some patients to take the drug. But it's a lot different than fifty percent. Bottom line: to make intelligent choices about treatments, patients need to understand how many patients like them are really expected to benefit from the treatment.

A recent medical malpractice lawsuit prosecuted by Patrick Malone & Associates for the victim of a delayed diagnosis of skin cancer highlights the need for annual skin checks by a qualified doctor. Anyone who is fair-skinned, sunburns easily, or has a lot of moles on their skin should see a dermatologist or a good primary care doctor for annual skin checks. These can be part of a routine physical exam. The doctor should measure and do sketches of the moles' location and appearance on your skin, or should take good photographs. A change in a mole is one of the key indicators of potential for malignant melanoma, a skin cancer which is deadly once it gets into the bloodstream but is 100% curable when still confined to the skin. Patients and their families often don't notice subtle changes in a mole -- getting bigger, changing color, etc. -- that health care providers can pick up.

In the legal case of Semsker v. Lockshin, a benign mole on the patient's lower back turned into a deadly melanoma over an eight-year period, during which time the mole's presence and change in size was documented by the dermatologist. The lawsuit alleged the dermatologist should have removed the mole two years before it finally was removed, when it had already invaded the patient's lymph nodes. Mr. Semsker died 14 months after the diagnosis.

In their defense of the malpractice lawsuit, the dermatology practice of Norman Lockshin, M.D., P.A., contended that they would have told the patient to get skin checks even more often than he was (every few years from either his primary doctor or his dermatologist), although this recommendation was not documented in their records.

Regardless, every patient needs to know about the dangers of melanoma and the need for regular skin exams. Exams should focus on the ABCDE's of skin cancer: A for Asymmetry of the mole; B for irregular Borders; C for variegated Color or unusual color in the mole; D for diameter greater than 6 millimeters, and E for Evolution or changes in the mole's size, shape or color.

Nowadays, people can look up their symptoms, self-diagnose certain conditions, find studies about the efficacy of various treatments, and find out what the medical community's consensus opinion is on a wide range of issues--all things that they once relied on doctors for.

Dr. Marisa Weiss, a breast oncologist quoted in the article, points out that doing independent research before a doctor's appointment has become mandatory because doctors have less and less time for patients. So it's in the patients' best interests to come in some idea of what's going on, so they can communicate what they've learned to their doctors and the appointment will proceed with more efficiency.

However, coping with so much information can be a puzzling experience. The article lists several helpful suggestions, such as considering what mental impact doing the research will have on you, exploring non-Internet sources, using your research as a supplement to your doctor rather than as a complete replacement, and other such useful tips. The whole thing is worth a read.

She notes that many doctors would like to express empathy to patients when delivering terrible news, but due to the load of cases they are dealing with, are afraid of spending too much time comforting one patient when there are others that need attending to.

She argues that expressing empathy takes less time than one might anticipate, especially if you use the right strategies: for instance, she recommends expressing empathy throughout a consultation instead of waiting until the very end, as some doctors tend to do.

Some of these errors occur through sheer carelessness: for example, 100,000 people a year die from "superbugs," bacteria that are resistant to available antibiotics. Infections from these superbugs can frequently be prevented by hand-washing. Yet other errors are the system's fault and not the fault of any individual. They occur because of overcrowding and the consequent inability of doctors and nurses to spend sufficient time with each patient.

The article also cites an Auburn University study showing that hospitals administer the wrong drug one time out of five. The dosage of the drug is another common source of error. A famous recent example of a drug error is from last November when actor Dennis Quaid's newborn twins were given 1,000 times the intended dose of the blood-thinner heparin. Luckily the hospital detected the error before permanent damage was done.

What is the bottom line? There are no magical solutions, especially since most of these problems are systemic. As a doctor quoted in the article says: "If you're sick, the best way to avoid getting sicker is to take charge of your care." Asking questions and being unafraid to make demands is the most any individual patient, or their loved ones, can do to reduce risk of error.

It begins with the harrowing story of Randy Steele, who died after the kidney-liver transplant that could have saved his life was stalled by his insurer.

Even if patients do not die as a result of these repeated denials and delays, they often end up unable to follow their doctors' instructions and their health suffers seriously as a result.

The Blade conducted interviews with 100 physicians and did a survey of 920, which you can read more about by clicking the above link. The results of both the interviews and the survey show that doctors believe that insurers countermanding or stalling their orders is creating a crisis in health care. Of the survey's 920 respondents, more than 99 percent said that insurers had interfered in their medical decision-making.

Clearly doctors are more qualified to make medical decisions than insurance companies. Any health care system that allows a bureaucrat working for an insurance company to make these calls will inevitably end up creating the tragedies that this article describes.

Tara Parker-Pope has a blog post about how doctors will treat women of childbearing age as "pre-pregnant," focusing on their reproductive capacities to the detriment of their overall health. Obviously reproductive matters are an important part of overall health and can influence many other medical conditions. But so can a lot of other common issues: neurological and psychological problems, drug-related issues, alcohol and tobacco habits, gastrointestinal issues, and so on all have a huge effect on a person's overall health. Yet these issues do not command the same attention from many doctors, who focus on the potential for a pregnancy rather than on the woman as a whole patient. As a consequence, the woman's health suffers.

The comments section of the post is enlightening and makes it clear that this is an issue many women face and are extremely angry about. There are also a few dismissive comments telling women to "get over it," displaying the ignorance and foolishness that enable these attitudes in the first place.

The best way for patients to deal with this is to remember to call their doctors after testing and keep in mind that no news is not necessarily good news.

Another thing that patients can do is always ask the testing facility for a copy of the test results. Some laboratories and radiology offices resist this, but every patient has a right to their own records.

Serious injuries can happen to patients from delayed treatment due to these failures of communication, so it's important for patients to be pro-active about their test results.

What can a patient do about this? A possible solution would be to carefully ask and write down what specific test your doctor has ordered for you. Ask when the results of the test are expected from the lab. Then make sure you call to follow up after the doctor's office should have received the results. Read the results report, if you can get hold of it, to see the name of the test and make sure that the results are for the same test that was ordered and performed. All of these things might help reduce your risk. Calling the doctor to follow up is probably the most important item on the list, as Dr. Lamberts says in his quotation in the linked NY Times blog post.

The rules for doctors can be boiled down to respect for the patient's feelings and understanding that they did not come to the office in order to waste the doctor's time for the sheer pleasure of it. Dr. Robert Lamberts, who blogs under the name of "Dr. Rob," is the physician who initially invented the rules for doctors quoted by Parker-Pope. His original article can be found on his blog, Musings of a Distractible Mind.

Dr. Lamberts also wrote the rules for patients, which mostly focus on the importance of being honest and open with your doctor, maintaining the lines of communication between you and the doctor and finding a doctor you can trust.

The linked article describes the change in direction between May 20th of this year, when Kennedy's brain cancer was first disclosed and surgery was not discussed as a possible treatment, and two weeks later, when neurosurgeons performed a "successful" surgery on his brain.

Why the change? From the article:

Precisely why Mr. Kennedy’s treatment course changed is not known; he and his doctors are not talking to reporters.

What is known is that a few days after Mr. Kennedy learned he had a malignant brain tumor in the left parietal lobe, he invited a group of national experts to discuss his case.

The meeting on May 30 was extraordinary in at least two ways.

One was the ability of a powerful patient — in this case, a scion of a legendary political family and the chairman of the Senate’s health committee — to summon noted consultants to learn about the latest therapy and research findings.

The second was his efficiency in quickly convening more than a dozen experts from at least six academic centers. Some flew to Boston. Others participated by telephone after receiving pertinent test results and other medical records.

As the article notes, Senator Kennedy called similar conferences of experts when one of his children was diagnosed with bone cancer and the other with lung cancer. He has been known to advise his colleagues in the Senate to use this method when dealing with an illness in the family.

Obviously, powerful senators can do things the rest of us cannot. Again, from the article:

Mr. Kennedy can tap leading doctors for answers in a way few patients could. His celebrity status aside, he has spent a career promoting insurance and other ways to improve the health of Americans. And he has had a track record of being thorough and diligent in researching medical options when relatives or friends have fallen ill.

Nevertheless, despite Kennedy's power and influence, there are ways in which the average person can imitate his example and seek second and third opinions on their medical care:

Several doctors not connected with Mr. Kennedy’s case said in interviews that they admired his resourcefulness in getting more opinions simultaneously. At the same time, these doctors said many average patients gained competent advice, without a command performance, by sending pertinent records to experts for their opinions.

Many patients search the Internet for medical information and ask that their scans and other data be sent electronically or by overnight services.

Then such patients visit, call or write the consultant.

The potential negative consequence of all this opinion-shopping is that people may focus on what they want to hear and disregard everything else. This is partly why the doctors quoted in the article strongly recommend actually meeting physicians whose advise you intend to take (rather than just sending records and receiving written responses). That way the physician can make sure your expectations are realistic and address your specific concerns.

About one in four patients feel that their physicians sometimes expose them to unnecessary risk, according to data from a Johns Hopkins study published this year in the journal Medicine. And two recent studies show that whether patients trust a doctor strongly influences whether they take their medication.

The distrust and animosity between doctors and patients has shown up in a variety of places. In bookstores, there is now a genre of “what your doctor won’t tell you” books promising previously withheld information on everything from weight loss to heart disease.

What are the reasons for this new distrust? Several factors appear to be involved:

(1) Patients often don't understand what is going on with their health care because doctors and nurses are too rushed to explain things to them. Dr. Sandeep Jauhar, cardiologist and author of Intern: A Doctor's Initiation, is quoted in the article with a story of a patient who was transferred from one hospital to another with no explanation for why. He blamed a "broken system" for such failures to communicate.

(2) There has been greater coverage in the news of medical error, the power of the drug industry and the flaws in health care administration.

(3) The Internet makes information much more available, so patients can be informed skeptics. Drug companies also market directly to patients, so they come into the doctor's office with their own desires and opinions on what medications they should take. The upside to this is that patients have the information to challenge a doctor's errors. The downside is that many end up taking a drug commercial, for instance, at face value and will not listen to a doctor's reservations about the efficacy of a drug.

Again, from the article:

“Doctors used to be the only source for information on medical problems and what to do, but now our knowledge is demystified,” said Dr. Robert Lamberts, an internal medicine physician and medical blogger in Augusta, Ga. “When patients come in with preconceived ideas about what we should do, they do get perturbed at us for not listening. I do my best to explain why I do what I do, but some people are not satisfied until we do what they want.”

The whole article is worth reading. In addition, the article's page also has an embedded video clip of interviews with people discussing their attitudes to their doctors.